Strategic Communication in the HIV AIDS Epidemic

Strategic Communication in the HIV/AIDS Epidemic

Strategic Communication in the HIV/AIDS Epidemic

Neill McKee Jane T. Bertrand Antje Becker-Benton

SAGE Publications New Delhi l Thousand Oaks l London

Copyright © Johns Hopkins Bloomberg School of Public Health Center for Communication Programs, 2004 All rights reserved. No part of this book may be reproduced or utilized in any form or by any means, electronic or mechanical, including photocopying, recording or by any information storage or retrieval system, without permission in writing from the publisher.

First published in 2004 by Sage P ublications India Pvt Ltd Publications B-42, Panchsheel Enclave New Delhi 110 017 Sage P ublications Inc Publications 2455 Teller Road Thousand Oaks, California 91320

Sage P ublications Ltd Publications 1 Oliver’s Yard, 55 City Road London EC1Y 1SP

Published by Tejeshwar Singh for Sage Publications India Pvt Ltd, typeset in 10pt BruceOldStyle BT by Star Compugraphics Private Limited, New Delhi and printed at Chaman Enterprises, New Delhi.

Library of Congress Cataloging-in-P ublication Data Cataloging-in-Publication McKee, Neill. Strategic communication in the HIV/AIDS epidemic/Neill McKee, Jane T. Bertrand, Antje BeckerBenton. p. cm. Includes bibliographical references and index. 1. AIDS (Disease)—Prevention. 2. Health behavior. 3. Health education. 4. Communication in medicine. I. Bertrand, Jane T. II. Becker, Benton Lee, 1938–III. Title. RA643.8.M38

362.196'9792—dc22

ISBN: 0–7619–3207–0 (US–Hb) 0–7619–3208–9 (US–Pb)

2004

81–7829–324–2 (India–Hb) 81–7829–325–0 (India–Pb)

Sage P roduction T eam: Geetanjali Minhas, O.P. Bhasin and Santosh Rawat Production Team:

2004001250

Contents List of Boxes

9

List of Figures

11

List of Plates

13

Abbreviations

15

Acknowledgments

19

Chapter 1: The Challenge of Combating HIV/AIDS

23

The Complex Challenge Global Responses Strategic Communication: An Essential Ingredient Audience for this Book Organization of this Book

23 24 26 27 28

Chapter 2: Strategic Communication in the F ight Against HIV/AIDS Fight

30

The Challenge Elements of Strategic Communication A Paradigm Shift from Behavior Change to Social Change Conclusion

30 31 41 53

Chapter 3: Communication for Social and Behavioral Change

55

Advocacy to Strengthen Political Commitment Case Study: Application of the AIDS Impact Model in Cambodia Social Mobilization to Bolster the National Response Case Study: Stop AIDS, Love Life in Ghana Interventions to Strengthen Community Responses Case Study: Mobilizing Traditional Networks in Guinea Promoting a Balanced Approach to Prevention Messages: The “ABCs” of Safer Sexual Practices Case Study: Communicating Safer Sex in Zambia Communication to Reduce Stigma Case Study: Brief Examples of Disclosure and Compassion in Africa

55 63 65 73 76 85 88 99 101 107

6 Strategic Communication in the HIV/AIDS Epidemic

Chapter 4: R eaching Special Audiences Reaching

110

Preventing HIV Infection in Young People Case Study: Communication for Social Norm Change in Adolescent Reproductive Health in Bangladesh Focusing on Gender: Reaching Women and Girls, Men and Boys Case Study: Sara: A Role Model for African Girls as they Face HIV/AIDS Case Study: Involving Boys in Zambia: The Chikomeni Youth Camp Sex Workers: Shifting the Balance of Power Case Study: SHAKTI Project of Bangladesh Reaching Men Who Have Sex with Men Case Study: Naz Foundation Trust of India Prevention and Injecting Drug Users Case Study: IDUs in New Delhi, India Reaching Mobile Populations Case Study: The Lesedi Project Among South African Miners Case Study: Tea Parlors for Truckers in India HIV/AIDS in Conflicts and Emergency Situations Case Study: Health of Adolescent Refugees Project (HARP)

110 121

Chapter 5: Communication for Health and Social Services

183

HIV/AIDS and Services: An Overview Case Study: The Ugandan Yellow Star Program Increasing Use of Voluntary Counseling and Testing (VCT) Case Study: New Start in Zimbabwe Prevention of Mother-to-Child Transmission Case Study: Expansion of PMTCT in Thailand The Role of Communication in Anti-Retroviral Therapy Case Study: Going to Scale with Anti-Retroviral Therapy in Brazil Improving the Quality of Life of People Living with HIV and AIDS Case Study: The Commuter AIDS Information Project, South Africa Case Study: Orphans and Other Vulnerable Children in Malawi

183 191 193 204 206 216 217 225 228 233 235

Chapter 6: Selected Strategic Approaches

238

Using Entertainment–Education for HIV/AIDS Prevention Case Study: The BBC Entertainment–Education Program in India Peer Education Case Study: Peer Education Among Factory Workers in Thailand Case Study: Peer Educators at Mumias Sugar Company in Kenya Telephone Hotlines Case Study: The South Africa AIDS Hotline Using Information Communication Technologies (ICTs) Case Study: Setting Up an Electronic AIDS Network in South East Asia

238 248 252 259 262 263 268 271 282

122 133 135 138 147 148 156 158 163 165 171 172 174 180

Contents 7

Chapter 7: P resent and F uture Challenges for Communicators Present Future

285

Comprehensive Approaches to Prevention, Including the ABCs Addressing Stigma New Findings on STIs and HIV Biology, Culture, and Risk Risk, Behavior, and Technology Public Health and Human Rights Conclusion

285 288 290 291 294 296 299

Appendix: R esources to K eep Communication Specialists Updated Resources Keep

300

Bibliography

312

Index

333

About the Authors

350

List of Boxes 2-1 2-2 2-3 2-4 2-5

Types of Research Needed to Guide Decision-making Factors Influencing the Choice of Communication Channels P-Process (revised)—Steps in Strategic Communication Participation Analysis—Potential Actors for Advocacy and BCC Participants in Program for Female Sex Workers (FSWs), Maharashtra, India

35 39 49 50 51

3-1 3-2 3-3 3-4 3-5 3-6 3-7 3-8

HIV/AIDS Communication Planning in Maharashtra, India Ladder of Empowerment The Community Action Cycle The Journey of Hope Additional Community-Based Tools The Role of the “ABCs” in Reducing HIV Rates in Uganda Lessons from Success in Uganda and Thailand A Controversial Condom Advertisement

69 79 80 82 83 91 92 95

4-1 4-2 4-3 4-4 4-5 4-6 4-7 4-8 4-9

Examples for Entertainment–Education Elements of Successful Sexuality Education Programs Tips for Success in Working with Young People “Men Aren’t from Mars”: Unlearning Machismo in Latin America Stepping Stones Approach Causal Factors in FSWs’ Vulnerability to HIV The Sonagachi Project in Kolkata, India Reaching Truck Drivers in India Hot Spots and Risk Zones

114 119 120 126 128 139 144 166 168

5-1 5-2 5-3 5-4 5-5 5-6 5-7 5-8 5-9 5-10

The Continuum of Care in Action in India VCT in Africa The Benefits of VCT Quality of VCT Services Increasing Demand for VCT VCT in India Profits from New Start, Zimbabwe A Four-Pronged Approach to PMTCT The Importance of Infant Feeding Guidelines for PMTCT Nigeria: Excellence in PMTCT Communication Planning HIV/AIDS Workplace Interventions

185 194 195 199 202 205 207 210 214 232

10 Strategic Communication in the HIV/AIDS Epidemic

6-1 6-2 6-3 6-4 6-5 6-6 6-7 6-8 6-9 6-10 6-11 6-12 6-13 6-14 6-15

Let’s Go With the Times Sara Saves Her Friend Soul City’s Impact on Domestic Violence Spin-off in West Africa: Clés de la Vie Regional E–E Using Popular Music Scriptwriting for Meena Strengthening Capacity by Training Ugandan Producers on the Job Targeted Recruitment of Peer Educators is Important The TanZam Highway Peer Educators Tips for Success in Peer Education Innovative Ways to Combine Community Level E–E with Mass Media: A Distance Learning Radio Show in Zambia CT-based AIDS Education at the Workplace Tools for Program Managers Radio Presenters Browsing the Internet for Their Audiences Tips for Success

241 242 242 244 246 247 248 253 256 259 274 277 279 281 281

List of F igures Figures 2-1 2-2 2-3 2-4

32 32 33 45

2-5 2-6

The P-Process for Strategic Communication Planning The Stages of Health Communication Steps in Developing a Behavior Change Communication Strategy Behavior Development and Behavior Change in the Social and Environment Context Pathways Communication Model for HIV/AIDS Revised P-Process

3-1 3-2

Strategic Communication Components Community Action Cycle

73 80

4-1 4-2 4-3a 4-3b 4-3c 4-3d

Model Illustrating the Interdependence of Life Skills MSM Identities in India Condom Used during Last Non-regular Sex Condom Used during Last Paid Sex Sexual Intercourse with Paid Partners Sexual Intercourse with Non-regular Partners

115 155 166 166 166 166

5-1

The HIV/AIDS Continuum of Care

185

47 48

List of Plates 2-1 Adolescent participation in Bangladesh ARH design workshop. (Credit: CCP)

52

3-1 NGOs, researchers, and media organizations developed a communication 70 plan to deal with HIV/AIDS during a week-long communication planning workshop in Maharashtra, India. (Credit: CCP) 3-2 Stop AIDS, Love Life road shows attracted large crowds and raised HIV/AIDS 74 awareness in Ghana. (Credit: CCP) 3-3 A traditional leader in Ghana takes part in the World AIDS Day procession 75 in support of the Stop AIDS, Love Life program, February 2001. (Credit: CCP) 3-4 The Journey of Hope toolkit in Ghana illustrates how behavior affects the spread 82 of HIV/AIDS. (Credit: CCP) 3-5 A comic book, Marcelline and Jojo, for Francophone Africa promotes open 108 discussion and support for PLHA. (Credit: Projet Regional Santé Familiale et Prévention du SIDA) 4-1 “Not everyone is doing it.... If your time hasn’t come, don’t have sex,” reads an HIV/AIDS poster for young people in Honduras. (Credit: Nicaragua Comision Interagencial de Salud Reproductiva) 4-2 Comic book series on Adolescent Reproductive Health in Bangladesh dealing with HIV/AIDS and many related subjects. (Credit: AV Com/BCCP) 4-3 The Sara stories provide a role model to empower African girls to deal with unwanted sexual advances. (Credit: UNICEF) 4-4 Zambian boys at a sports camp, which combines both soccer training and education in reproductive health and HIV/AIDS. (Credit: Youth Activists Organization) 4-5 Discrete, pocket-size communication materials for MSM. (Credit: Humsafar Trust, Mumbai, India)

111

123

134

136

152

14 Strategic Communication in the HIV/AIDS Epidemic

5-1 Gold Circle Quality Teams in Togo, Cameroon, and Burkina Faso encourage dialogue between clients and providers: “We are here to listen to you”. (Credit: Projet Régionale Santé Familiale et Prévention du SIDA) 5-2 The first phase of Uganda’s Yellow Star program stimulated active community support and involvement. (Credit: Delivery of Improved Services for Health Project)

188

6-1 Adolescents sing and dance at a DramAidE theater performance in South Africa. (Credit: Patrick Coleman/CCP) 6-2 Detective Vijay, a TV serial drama involving HIV/AIDS in India. (Credit: BBC World Service Trust) 6-3 HIV/AIDS telephone hotline poster from Nigeria’s Youth Empowerment Foundation (YEF). (Credit: YEF, CCP) 6-4 Zambia distance education by radio. (Credit: Nikkie Ashley)

241

193

250 264

274

Abbreviations ABC AED AFRO-NETS AIDS AIM ANC APDIME APROPO ARH ARV ART AVERT AW BBC BCC BPWT CADRE CAFS CAI CARAM CBD CBOs CBT CCP CDC CDI CD-4 CHESS CIIR CIT CONNECT COPE

Abstinence, Being faithful and Condom use Academy for Educational Development African Networks for Health Research and Development Acquired Immunodeficiency Syndrome AIDS Impact Model Ante-Natal Clinic Assessment, Planning, Design, Implementation Monitoring, and Evaluation Apoyo a Programas de Población Adolescent Reproductive Health Anti-Retroviral Anti-Retroviral Therapy International HIV and AIDS charity based in the UK, with the aim of AVERTing HIV and AIDS worldwide All Workers British Broadcasting Corporation Behavior Change Communication Bhoruka Public Welfare Trust Centre for AIDS Development, Research and Evaluation Centre for African Family Studies Computer Assisted Instruction Coordination of Action Research on AIDS and Mobility Community-Based Distributors Community-Based Organizations Computer-Based Training Johns Hopkins Bloomberg School of Public Health, Center for Communication Programs Center for Disease Control and Prevention Committee to Democratize Information Technology T-Helper White Blood Cells Computer-Based Health Information/Support System Catholic Institute for International Relations Crisis Intervention Teams Zimbabwe Institute of Systemic Therapy Community-based Options for Protection and Empowerment

16 Strategic Communication in the HIV/AIDS Epidemic

CSW CUP DCSA DfID DHS DISH DOTS DPKO E–E FAO FBO FGC FHI FP FPAK FSW GIPA GRIDS GTZ GUD HAART HARP HCA HCP HCPs HCPS HEART HIV HSV-2 ICRW ICT IDP IDU IDUs IEC IMPACT IPC IPC/C JHU/CCP JOH KAP LSE

Commercial Sex Worker Caring Understanding Partners Daimler Chrysler in South Africa Department for International Development (UK) Demographic and Health Surveys Delivery of Improved Services for Health Directly Observed Therapy (for TB) Department of Peace Keeping Operations Entertainment–Education Food and Agriculture Organization Faith-Based Organizations Female Genital Cutting Family Health International Family Planning Family Planning Association of Kenya Female Sex Worker Greater Involvement of People with HIV or AIDS Gay-Related Immune Deficiency Syndrome German Technical Cooperation Genital Ulcer Disease Highly Active Anti-Retroviral Therapy Health of Adolescents Refugees Project Health Care Administration Health Communication Partnership Health Care Providers (Private, public, allopathic or non-allopathic) Health Care Provider Study Helping Each Other Act Responsibly Together (Zambian HIV/AIDS prevention campaign for youth) Human Immunodeficiency Virus Herpes Simplex Virus (Type-2) International Center for Research on Women Information Communication Technology Internally Displaced People Injection Drug Use Injecting Drug Users Information–Education–Communication Implementing AIDS Prevention and Care Project, managed by FHI Interpersonal Communication Interpersonal Communication and Counseling Johns Hopkins Bloomberg School of Public Health, Center for Communication Programs Journey of Hope Knowledge, Attitudes and Practices Life Skills Education

Abbreviations 17

MARCH MCH MDACS MOH MOPH MSACS MSM MTCT NA NAA NACO NACP NAPWA NCE NCHADS NECTOI NGO NNRTI NNVAW OI OVC PALS PATH PI PLA PLHA PMTCT PRA PRISM

PSA PSI RAP+ RH RHC RHO SARS SCI SFPS SHAKTI SMS SOMARC

Modeling and Reinforcement to Combat HIV/AIDS (Model) Maternal and Child Health Mumbai District AIDS Control Society Ministry of Health Ministry of Population and Health Maharashtra State AIDS Control Society Men who have Sex with Men Mother-to-Child Transmission Nucleoside Analogues National AIDS Authority National AIDS Control Organization National AIDS Control Program National Association of People with AIDS NAPWA Commuter Educators National Center for HIV/AIDS, Dermatology and STDs National Employment Council for Transport Operating Industry Non-Governmental Organization Non-Nucleoside Reverse Transcriptase Inhibitors National Network on Violence Against Women Opportunistic Infection Orphans and Other Vulnerable Children Positive and Living Squad Program for Appropriate Technology in Health Protease Inhibitor Participatory Learning in Action People Living with HIV/AIDS Prevention of Mother-to-Child Transmission Participatory Rapid Appraisal Pour Renforcer les Interventions en Santé reproductive et MST/SIDA (or Strengthening Reproductive Health and Sexually Transmitted Diseases/AIDS Interventions Project) Public Service Announcement Population Service International Réseau Africain des Personnes avec le VIH/sida (Network of African People living with HIV/AIDS) Reproductive Health Rural Health Centre Reproductive Health Outlook Severe Acute Respiratory Syndrome Sara Communication Initiative Santé Familiale et Prévention du Sida (Family Health and AIDS Project) Stopping HIV/AIDS through Knowledge and Training Initiatives Project Short Message Service Social Marketing for Change Project

18 Strategic Communication in the HIV/AIDS Epidemic

SRH STD STI SW TAMPEP TASO TB TBA UNAIDS UNDP UNESCO UNFPA UNHCR UNICEF USAID VCT VIPP WAGGGS WHO WST WWW YAO ZDV ZIHPCOMM

Sexual and Reproductive Health Sexually Transmitted Disease Sexually Transmitted Infections Sex Worker Transnational AIDS/SIDA Prevention among Migrant Prostitutes in Europe Project The AIDS Support Organization Tuberculosis Traditional Birth Attendants United Nations Joint Programme on HIV/AIDS United Nations Development Programme United Nations Educational, Scientific and Cultural Organization United Nations Fund for Population Activities United Nations High Commission for Refugees United Nations Children’s Fund United States Agency for International Development Voluntary Counseling and Testing Visualization in Participatory Programs World Association of Girl Guides and Girl Scouts World Health Organization World Service Trust (of BBC) World Wide Web Youth Activist Organization Zidovudine Zambian Integrated Health Programme Communication and Community Partnerships

Acknowledgments Over the last 20 years, numerous organizations have been involved in different types of communication programs for HIV/AIDS prevention and care, and, more recently, a wider range of HIV/AIDS services. The authors have based this book on many of these experiences, including the past and current work at the Center for Communication Programs (CCP), Johns Hopkins Bloomberg School of Public Health. Supported primarily by the United States Agency for International Development (USAID), CCP has been working in over 50 developing countries in the past 25 years, with an ever-increasing portfolio in HIV/AIDS within the Health Communication Partnership (HCP) and other projects. In addition, the authors have drawn on their experience in HIV/AIDS at their former organizations: Neill McKee (UNICEF and IDRC, Canada), Jane Bertrand (Tulane University School of Public Health and Tropical Medicine), and Antje Becker-Benton (GTZ, South Africa and Bushradio 89.5, Cape Town). The authors owe a debt of gratitude to a number of past and present CCP staff who drafted specific sections of text for this book, listed below in the order of appearance of the sections: Chapter 3 Social Mobilization to Bolster the National Response/ Case Study: Stop AIDS, Love Life in Ghana Interventions to Strengthen Community Responses/ Case Study: Mobilizing Traditional Networks in Guinea Promoting a Balanced Approach to Prevention Messages: The “ABCs” of Safer Sexual Practices Communication to Reduce Stigma

Chapter 4 Preventing HIV Infection in Young People

Focusing on Gender: Reaching Women and Girls, Men and Boys Sex Workers: Shifting the Balance of Power Reaching Men Who Have Sex With Men

Ian Tweedie Guillaume Bakadi Fannie Fonseca-Becker Susan Krenn Robert Ainslie Elizabeth Serlemitsos Kim Seifert Aida Olkkonen

Cheryl Lettenmaier Elizabeth Serlemitsos Jane Brown Stella Babalola Carol Sienche Lisa Cobb Lisa Cobb

20 Strategic Communication in the HIV/AIDS Epidemic

Prevention and Injecting Drug Users Reaching Mobile Populations HIV/AIDS in Conflicts and Emergency Situations Chapter 5 HIV/AIDS and Services: An Overview Increasing Use of Voluntary Counseling and Testing (VCT) Improving the Quality of Life of People Living with HIV or AIDS Chapter 6 Peer Education

Telephone Hotlines Using Information Communication Technologies (ICT) Appendix: R esources to K eep Communication Resources Keep Specialists Updated

Lisa Cobb Aida Olkkonen Esther Braud

Michelle Heerey Cheryl Lettenmaier Kate Stratten Kim Seifert

Jane Brown Cheryl Lettenmaier Elizabeth Serlemitsos Robert Ainslie Kate Stratten Marcela Aguilar Susan Leibtag Hugh Rigby Benjamin Lozare Jaya Nair

In addition, several CCP colleagues developed section outlines, suggested material for inclusion, or helped find relevant material: Aaron Brady, Stella Babalola, Patrick Coleman, Margaret D’Adamo, Maria Elena Figueroa, Larry Kincaid, Judy Mahacheck, Alice Payne Merritt, Andrew Plumer, Hugh Rigby, Jose Rimon, Gary Saffitz, Niranjan Singh, Amelie Sow, Youssef Tawfik, Dana Weckesser, and Kevin Zembower. The authors would like to extend a special thanks to the following staff at CCP for their help in editing and preparing the final manuscript for publication: Mark Beisser, Amanda Bowling, Kim Martin, Rita Meyer, Sujata Naik, Lavina Velasco, and Kathy Wolfe. As mentioned above, this book highlights the efforts of many other agencies and organizations working on HIV/AIDS in developing countries. We extend our thanks to the following colleagues who wrote and/or provided material for case studies: Sohail Agha, formerly PSI Jodi Ansel, Pathfinder Clement Bwalya, Youth Activists Organization, Zambia Shari Cohen, UNICEF Consultant Lisanne Brown, Horizons Program/Tulane University Stacia Burnham, ICRW Deborah Heimann, The Communication Initiative Dr. S. Jana, CARE India

Acknowledgments 21

Carol Larivee, FHI/Impact Ronnie Lovich, Save the Children O. Cam Hoeun, FHI Cambodia Hally Mahler, YouthNet Luis F. Martínez, PASMO Honduras Gordon Nyanjom, PSI Kenya Julie Pulerwitz, Horizons Program/PATH Shaleen Rakesh, Milan Project of the Naz Foundation Trust Gail Snetro, Save the Children John Stover, Policy Project/Futures Group Marco Antonio Vitoria, Brazil AIDS Program Mary Wiecynski, PSI Kenya. We are grateful to the following individuals who reviewed earlier drafts of one or more sections of the book: Lisa Howard-Grabman and Angela Brasington, Save the Children/HCP Shari Cohen, UNICEF Consultant for PMTCT Suzanne Maman, Johns Hopkins Bloomberg School of Public Health At the request of Sage Publications, Dr. Arvind Singhal, Presidential Research Scholar and Professor, School of Communication Studies, Ohio University, and Mahesh Mahalingam, Communication Advisor, UNAIDS, Geneva, reviewed the manuscript and gave excellent advice. John Howson, Senior Program Advisor at HCP and staff of the International HIV/ AIDS Alliance, carried out a comprehensive technical review. These inputs were tremendously valuable. Notwithstanding the extensive input from many colleagues, the authors are fully responsible for any errors or omissions. The opinions expressed are those of the authors and do not necessarily reflect the views of the organization for which they work, nor of any other organization. Last but not least, the authors would like to thank their spouses, Elizabeth McKee, Bill Bertrand and Stanley Benton for their continued patience, personal and sometimes technical support for this project.

Chapter 1

The Challenge of Combating HIV/AIDS The Complex Challenge The AIDS epidemic, a staggering challenge by any measure, becomes more complex every year. The number of people infected with HIV climbs by 14,000 daily—12,000 adults and 2,000 children. As of December 2003, it was estimated that between 34 to 46 million people worldwide, had HIV or were living with AIDS (UNAIDS, 2003). Of the persons infected, 71 percent live in sub-Saharan Africa, the continent hardest hit by the epidemic (UNAIDS, 2002a). At present, seven sub-Saharan countries, all in southern Africa— Botswana, Lesotho, Namibia, South Africa, Swaziland, Zambia, and Zimbabwe—have an adult HIV prevalence rate of 20 percent or more, with at least one in five adults between 15 and 49 years infected. Today, more than 13 million children currently under the age of 15 years have lost one or both parents to AIDS, most in sub-Saharan Africa. By 2010, this number is expected to jump to more than 25 million (UNAIDS, UNICEF and USAID, 2002). Governments see the future of their countries blighted by the social, economic, demographic, and health impact of this disease. Health facilities—lacking equipment, supplies, and personnel—must find ways of coping with a growing number of people living with HIV and AIDS (PLHA). Many health and social service systems are near collapse under this continuously escalating burden. Yet Africa has no monopoly on the disease. China, with one-fifth of the world’s population, has detected localized epidemics in seven provinces and incipient epidemics in another nine, resulting from unsafe sale of blood plasma, a growing number of unsafe drug injections, commercial sex contacts, and an increasingly mobile population (NIC, 2002). India reported an adult prevalence rate of approximately 0.8 percent at the end of 2001 (UNAIDS, 2002a)— very low in comparison to much of Africa—but with a population of one billion, this rate translates into nearly four million PLHA. Only South Africa has more cases. At rates ranging from 1 to 6 percent, Caribbean countries have the second highest prevalence rate of any region in the world (UNAIDS, 2003); but because of a relatively small population, this region is only beginning to command more attention, internationally. Eastern Europe and Central Asia have the fastest growing regional epidemics; the number of cases skyrocketed from an estimated 5,000 in 1990 to 1.5 million at the end of 2003 (Lamptey et al., 2002; UNAIDS, 2003).

24 Strategic Communication in the HIV/AIDS Epidemic

In short, although some regions, such as North Africa and the Middle East, have maintained very low prevalence rates, the HIV/AIDS epidemic continues to spread with devastating consequences around the globe. If, miraculously, we were able to eliminate all new HIV infections within a year, the number of AIDS cases would continue to increase over the next 10 to 15 years, as those already carrying the virus begin to manifest symptoms of the disease.

Global Responses During the early days of the epidemic, most international agencies, donors and governments focused their efforts on primary prevention, while non-governmental organizations (NGOs) began the first initiatives in care and support. Prevention strategies included screening blood supplies, creating awareness of HIV through the mass media, and promoting safer sexual practices. The major thrust of early programs was promoting the use of condoms. In addition, a few countries employed approaches to changing structural factors that influence behavior, such as laws and regulations (Sweat and Denison, 1995). The experience of successful countries illustrates that strong and early preventive actions can effectively reduce HIV rates. Uganda was the first African country to reduce its HIV prevalence rate. The impressive decrease in prevalence from approximately 15 percent in 1991 to 5 percent in 2001 can be traced to open and effective communication and political will to fight HIV/AIDS, as well as multi-sectoral action. This led to decreases in sexual partners, increased use of condoms, especially with non-regular partners, and, to a lesser extent, delay in sexual debut (Green et al., 2003; Hogle, 2002; Parkhurst, 2001). Thailand was the first Asian country to stem the tide of its growing HIV/AIDS epidemic. Key ingredients for achieving this were political commitment, the enforcement of condom use at nearly 100 percent in brothels and a supporting mass media campaign (Rojanapithayakorn and Hanenberg, 1996). In the chapters that follow, we analyze in depth the reasons for success in these countries, and in Senegal, Zambia, Cambodia, and Brazil, as well as in specific vulnerable groups, such as gay communities in the western countries. In contrast, we also analyze countries where little progress has been made because success in the fight against HIV/AIDS has been the exception rather than the rule. It is clearly evident that in this new millennium, we face a global emergency that is manifesting itself first and foremost in sub-Saharan Africa and increasingly in India and China. Hospitals and health centers are unable to meet the demand for treatment of opportunistic infections (OIs) and other HIV-related problems. Family members of AIDS patients devote large portions of their productive time to care giving. Communities struggle to cope with the growing number of children orphaned by AIDS. In the face of human suffering at this scale and the unprecedented need for resources to deal with the problem, the international community is beginning to direct an increasing percentage of its resources to care, support, and treatment.

The Challenge of HIV/AIDS 25

In the 1990s, voluntary counseling and testing (VCT) emerged as a bridge between prevention and care, support, and treatment. VCT services have become relatively accessible, at least in urban areas in countries such as Botswana, Brazil, South Africa, Thailand, Uganda, and Zimbabwe. VCT allows people to learn their HIV status relatively quickly and confidentially. Those who test negative may feel empowered and motivated to protect themselves against future infection. Those who find they are seropositive may be able to take steps toward living positively, such as maintaining a positive mental state, eating more nutritious foods, and seeking treatment for OIs early on. Moreover, VCT programs can provide referrals to social and medical services, as well as psychological support groups. Finally, these same programs can encourage HIV-positive individuals to avoid infecting others or to protect themselves from reinfection. Knowing one’s status also may motivate people to use anti-retroviral therapy (ART). ARV drugs—especially the more effective “triple cocktail,” which is now called highly active antiretroviral therapy (HAART)—became widely available in industrialized countries in the mid-1990s where they turned the course of the epidemic for most PLHA. By following regimens strictly and testing for viral load periodically, PLHA have learned how to maintain their health. The expense of these drugs, however, made them inaccessible to most PLHA in developing countries until Brazil took the step to manufacture generic brands in-country, and, with international support, supply them free of charge to a large percentage of Brazilian PLHA (Singhal and Rogers, 2003). Indian companies have also followed suit but India is only now beginning to formulate its policy to supply such drugs to its four million PLHA. It will likely be some years before ARV drugs become widely available to the growing number of PLHA in developing countries. A promising role for ART emerged in the mid-1990s when clinical trials in Thailand and Uganda demonstrated the efficacy of using a short course of ARV drugs, together with VCT, in the prevention of mother-to-child transmission (PMTCT). It was found that mother-tochild transmission (MTCT) can be decreased by 50 percent through proper use of these drugs and improved obstetric practices (Shaffer et al., 1999). PMTCT is now becoming an integral part of the fight against HIV/AIDS in many countries. However, despite the demonstrated cost-effectiveness of PMTCT and VCT, these services remain out of the reach of the vast majority of pregnant women and new mothers, even in high-prevalence countries. Time is of the essence. Efforts made early in the growth of an epidemic have a much greater effect in reducing its scale than efforts made later in its course (R owley and Anderson, 1994). HIV experts have now defined a package of 12 essential prevention interventions and nine care and support activities that constitute the expanded response to HIV/AIDS in low- and middle-income countries (Schwartlander et al., 2001). If the international community implemented this comprehensive package of interventions on a large scale it would have great impact. Stover et al. (2002) have estimated (through mathematical modeling based on epidemiological analyses and results of intervention studies) that if such a package was implemented globally by 2005, it would be possible to reduce the number of new HIV infections by 63 percent by 2010.

26 Strategic Communication in the HIV/AIDS Epidemic

Strategic Communication: An Essential Ingredient In recent years, the global response to the HIV/AIDS epidemic has taken many forms. Governments have mobilized national AIDS control committees. The health sector has responded with intensified prevention activities, as well as care, treatment, and support. Ministries of education have brought HIV/AIDS prevention into the curriculum of primary and secondary schools. Ministries of information, finance, labor, women’s and community affairs, and many others have played a role in their respective sectors. New NGOs have sprung up around the world to provide health and social services for PLHA, home care for people with full-blown AIDS, and care and support for orphaned children. Since the onset of the epidemic, information and communication have played a role in this response. In many countries in the 1980s, well-intentioned health officers and other personnel with little or no experience in communication, developed messages aimed at instilling fear about HIV and AIDS. Such efforts often failed to engage the public in positive behavioral change. For instance, annual World AIDS Day, consisting of activities intended to create greater awareness of HIV/AIDS, have sometimes inadvertently stigmatized PLHA and so-called “high risk groups.” Strategic communication is a promising response to the HIV/AIDS epidemic that has been vastly underutilized to date. The systematic nature of strategic communication contrasts sharply with the ad hoc practice of designing an occasional poster or radio spot for a given cause. It combines a series of elements—extensive use of data, careful planning, stakeholder participation, creativity, high-quality programing, and linkages to other program elements and levels, among others—that stimulate positive and measurable behavior change among the intended audience. The challenges in the realm of behavior and social change remain daunting. The international HIV/AIDS community has learned a number of sobering lessons over the past two decades. Sexual behavior is often irrational, especially where alcohol and drugs are involved, which casts doubt on rational models of decision-making (Perloff, 2001). Many individuals are unwilling to acknowledge risk or to sacrifice sexual freedom (Richens et al., 2003). Even after success in behavior change, “backsliding” may occur. For example, the advent of HAART in the western world appears to have caused some in the gay community to adopt an attitude of “treatment optimism,” abandoning safer sex practices largely because HIV is no longer seen as a death sentence (Richens et al., 2003). The same may occur in developing countries as ART or HAART becomes more readily available. Experience from developing countries indicates that if we focus on individuals, rather than communities and social organization, we tend to “blame the victim” and will not have optimal impact. Cultural norms play a key role in sexual behavior, such that programs must attempt to change social norms as well as individual behavior (Airhihenbuwa and Obregon, 2000). This book argues that strategic communication, which can address both behavior and social change, is an approach that has proven highly effective in other areas of public health (e.g., family planning) and yet has been underutilized in the area of HIV/AIDS. In addition, structural and environmental factors have a powerful influence on individual behavior—a fact that has led numerous experts to propose combining interventions aimed at

The Challenge of HIV/AIDS 27

individual behavior change with those targeting structural change (Richens et al., 2003; Sweat and Denison, 1995). As discussed in detail in Chapter 3, advocacy and social mobilization are components of strategic communication that can be effectively employed to facilitate change in structural and environmental factors. Finally, this book argues that strategic communication also has an important role to play in the expanded range of services that are now integral to most national HIV/AIDS control programs: VCT, PMTCT, and care, treatment, and support for other PLHA. Within these interventions, communication should be considered an essential component for educating the public, shaping attitudes and perceptions, creating demand for services, and improving provider–client interaction. Communication strategies must be tailored to individual national settings and to the different sub-populations within each country. Experience has shown that comprehensive communication programs are needed in both low and high prevalence countries. In the early stages of an epidemic, governments and donor agencies have usually devoted most resources to targeted interventions with vulnerable groups, such as sex workers, truck drivers, and other members of the mobile workforce. However, such targeted action has often stigmatized such people and reinforced the denial of risk among the general population. Well-researched and well-designed communication programs can be used to counter this tendency and to increase public discourse on and acceptance of the threat of HIV/AIDS. Experience in Uganda and Thailand has shown that this is essential. Both low and high prevalence countries require intense focus on groups at high-risk because of their behaviors or vulnerabilities, often through interpersonal communication channels specifically directed to them (e.g., peer education among sex workers). Both require the engagement of the general public, although increased resources will be required for intensified efforts in higher prevalence countries. Moreover, in large countries such as India or China, small percentages translate into an enormous number of people infected with HIV. In China, the low sounding “0.1 percent prevalence rate” announced at the end of 2001 translates into at least one million seropositive individuals in 31 provinces (UNAIDS, 2002a; UNAIDS, 2003). Mass communication channels can complement other interventions in reaching large numbers of infected and affected people. Indeed, as countries realize the need to go to scale with HIV/AIDS interventions, strategic communication—a combination of mass media and interpersonal channels, together with both social and community mobilization—offers great promise.

Audience for this Book This book is directed to those who are working or are planning to work on some aspect of strategic communication, either in planning and/or implementing programs directly or in encouraging the incorporation of communication in specific projects. These different audiences may include: l

Communication Specialists: those responsible for designing and implementing actual communication programs in countries worldwide. This book provides an overview of

28 Strategic Communication in the HIV/AIDS Epidemic

l

l l

l

state-of-the-art techniques that have been used in different settings around the globe, with specific ideas—but no “cookie-cutter” prescriptions—on approaches to achieving behavior and social change. Public Health and Social Development Specialists: those people from multiple disciplines who work alongside communicators in researching, planning, designing, implementing, and evaluating programs. Non-Governmental Organizations (NGOs): those who often implement the types of activities outlined in this book, especially community-based interventions. National-Level P olicymakers and P rogram Managers Policymakers Program Managers: those responsible for implementing a national HIV/AIDS strategy, as well as local HIV/AIDS interventions. This book outlines the added value of strategic communication in addressing the full range of HIV/AIDS issues. Bilateral and International Agencies Agencies: those whose support is needed to implement large-scale communication efforts in the fight against HIV/AIDS. This book provides the rationale for investment in communication as part of the national response to HIV/AIDS, worldwide, as well as guidelines on appropriate ways of approaching the job.

Organization of this Book This book provides practical guidelines for designing strategic communication programs for HIV/AIDS and is organized as follows: Chapter 2 outlines the basic principles of strategic communication applicable to behavior and social change in general, as well as to HIV/AIDS in particular. Chapter 3 outlines the familiar roles of communication to date, which remain as important as ever: advocacy to garner political commitment and to improve policies, social mobilization to engage a broader range of sectors in the fight against HIV/AIDS, and community mobilization to promote prevention and encourage care and support of PLHA. This chapter also describes comprehensive approaches to prevention, including promotion of the “ABCs” (Abstinence and delay of sexual debut, Being faithful or reduce sexual partners, and Condom use). Finally, it discusses the use of communication in reducing stigma, a phenomenon that accompanies the HIV/AIDS epidemic, worldwide, and acts as a major obstacle to prevention, treatment, care, and support. Each of the sections of the chapter has subsections that cover the rationale for the approach, formative research questions, audiences and actors, strategic approaches, key issues to communicate, and challenges and lessons learned. Each section ends with a case study that demonstrates how the approach has been utilized in the context of a specific developing country. Chapters 4 and 5 are structured in a similar way. Chapter 4 focuses on communication programs for specific audiences. Whereas previous sections identify different audiences, this section provides more in-depth coverage of programing

The Challenge of HIV/AIDS 29

for particular subgroups within the population: young people, women/girls, men/boys, sex workers, men who have sex with men (MSM), injecting drug users (IDUs), uniformed services, mobile populations, and people living in refugee settings. Chapter 5 describes, in detail, the role of communication in support of the clinical and social services that have surfaced with the evolution of the HIV/AIDS epidemic: VCT, PMTCT, ART, services for PLHA, and care and support of orphans and other vulnerable children (OVC). Chapter 6 focuses on selected strategic communication approaches that the authors believe have shown both great potential in changing behavior and the capability to be further exploited: entertainment–education, peer education, telephone hotlines, and digital communication. Each of the sections in this chapter has subsections on rationale, formative research, audiences, strength of the approach, essential elements, challenges and lessons learned, plus a section on increasing local capacity. Case studies round off the documentation as well. Chapter 7 addresses some of the emerging challenges in combating HIV/AIDS. Finally, the Appendix provides an inventory of resources for professionals working in the area of HIV/AIDS prevention and care, in order to assist them in updating their knowledge, identifying prototype materials, networking with colleagues, and accessing formal training courses. Note: Throughout this book, we generally use the well-known acronym, “HIV/AIDS” to refer to the Human Immunodeficiency Virus (HIV) and its resulting condition—Acquired Immunodeficiency Syndrome (AIDS). However, we have tried to use “HIV” alone, “AIDS” alone, or “HIV and AIDS” when the issue being discussed relates to the virus alone, the disease alone, or to both the virus and the disease in a different manner. Evidence has shown that many people at the community level do not understand the difference between the stages of infection and the disease, including the fact that years of relatively healthy living can lie between them. This type of misinformation exacerbates stigma against people diagnosed with HIV.

Chapter 2

Strategic Communication in the Fight Against HIV/AIDS

The Challenge Strategic communication is an approach to the design and implementation of programs that increases their impact on behavior and social change. For some, communication may conjure up the image of a glitzy mass media campaign. Indeed, such programs can be effective in capturing the attention of the intended audience and influencing individual behavior and social norms. However, the most effective programs combine the power and reach of mass media with activities that allow face-to-face interaction, such as community-based events and interpersonal communication/counseling (IPC/C). Strategic communication starts with a vision that creates optimism—to avoid HIV, live positively, show compassion—and motivates people towards adopting specific behaviors. Based on a multi-disciplinary approach, drawing on sociology, psychology, anthropology, marketing, and other disciplines, strategic communication combines the science of a data-driven, systematic process with the art of creative programing. There is no recipe that one can follow mechanically but rather a set of guidelines that inform the process. Our main purpose in writing this book is to argue that well-executed, strategic communication has been vastly underutilized in the fight against HIV/AIDS. We have learned a great deal about strategic communication from other areas of social development, family planning in particular (Piotrow and Kincaid, 2001). Yet two decades of HIV/AIDS prevention work have shown that the epidemic presents unique challenges in terms of behavior change and requires new thinking. Few countries have used this approach in mounting their national response to HIV/AIDS to date. Whereas TV spots, billboards, community rallies, schoolbased events, and countless other communication activities abound, rarely are they part of a well-coordinated, systematic effort that extends to all levels and sectors of society. In this chapter, we begin by outlining the current state-of-the-art in strategic communication for social development, including HIV/AIDS. We present the elements used in designing, implementing, and evaluating effective programs. We explain the paradigm shift that has occurred in relation to HIV/AIDS prevention, which requires us to move beyond “business

Strategic Communication 31

as usual.” We conclude the chapter with our recommendations for more effective HIV/AIDS programing, which center on three principles: 1. Target social norms as well as individual behavior. 2. Expand beyond ad hoc interventions to a coordinated social movement. 3. Bring community-level activities to scale through a linkage with mass media.

Elements of Strategic Communication Although no two programs will evolve in exactly the same manner, certain common elements guide the design and implementation of any strong program. In this section, we expand on the elements outlined by Piotrow et al. (1997) and adapt them specifically to HIV/AIDS. (1) F ollow a Systematic Approach: In the early days of information–education– Follow communication (IEC) programs, well-intended communicators would often respond to a given problem by creating colorful posters or pamphlets for the intended audiences with information on the relevant topic. Absent was any analysis of the characteristics of the problem (e.g., prevalence levels), segmentation of the population most affected, existing levels of knowledge, psychosocial and economic barriers to service utilization, and other relevant factors. Over the past three decades, the field of social communication has evolved markedly, and many programs now use a systematic approach to the design and implementation of behavioral change interventions. The systematic approach refers to a sequence of steps that guide the planning and implementation of the program in which elements of design and execution are interspersed with data collection and analysis that inform decision-making. Several different models exist, but all are strikingly similar at the core. The Center for Communication Programs at the Johns Hopkins Bloomberg School of Public Health has promoted the “P-Process” since 1982. It entails five steps: (i) analysis, (ii) strategic design, (iii) development, pretesting, and production, (iv) management, implementation, and monitoring, and (v) impact evaluation (Figure 2-1). A model from the US-based National Cancer Institute involves an iterative, four-step process (Figure 2-2). Although the graphic is different, many of the concepts are similar to Figure 2-1. Family Health International (FHI, 2002a) has proposed a more detailed, 12-step process (Figure 2-3). These three models share several common characteristics: l l l l l

a sequential ordering of actions in the design, implementation, and evaluation of the program. in-depth analysis of the situation to guide the design process. creative design of communication products, based on empirical data. constant dialogue between those designing/implementing the program and those collecting data. continuous tracking of the process and outputs for mid-course corrections and other adjustments to the program.

32 Strategic Communication in the HIV/AIDS Epidemic Figure 2-1: The P -P rocess for Strategic Communication Planning P-P -Process

Source: JHU/CCP, 1997 Figure 2-2: The Stages of Health Communication

Source: National Cancer Institute, 2002

Strategic Communication 33 Figure 2-3: Steps in Developing a Behavior Change Communication Strategy

Source: Family Health International (FHI, 2002a)

(2) F ocus on the Objective: Programs have a better chance of being successful if they are Focus designed with specific results in mind. The goal of the international and national agencies working in this area is to halt the epidemic at the macro level. Most programs work toward the objectives of reducing HIV transmission, providing treatment, and providing care and support to those infected and affected by HIV/AIDS at the individual and community level. In the early days of the epidemic, communication program objectives generally reflected prevention in the form of achieving changes in knowledge, misconceptions, and practices— especially regarding condom use. Today, communication program planners and evaluators tend to be more specific about each objective, specifying the intended audience and time frame (e.g., to increase the percentage of young people age 10 to 17 years in country “X” who report they are not sexually active). In some cases, communication program planners and evaluators will also specify the magnitude of expected change in relation to existing services (e.g., to increase the number of youth who undergo VCT in city “Y” by 20 percent in a 12-month period). This approach presumes that baseline data are available.

34 Strategic Communication in the HIV/AIDS Epidemic

A clear focus on the objective helps to shape the design of the communication program and the types of activities to be undertaken. Focusing on results means that programs cannot stop at the production of catchy, appealing messages or seemingly effective outreach activities. Rather, their success is judged by the extent to which they actually achieve their objectives. (3) Segment the Audience: The choice of channels relies on the principles of audience segmentation. Audience segmentation derives both from epidemiology (identifying patterns of HIV transmission) and marketing (targeting those with relevant behaviors, interests, and needs). It involves identifying subgroups of the population and tailoring communication interventions to most effectively reach these groups. In the commercial sector, market segmentation often entails socio-economic status, age, gender, and increasingly, lifestyle. In the case of HIV/AIDS, segmentation also uses these same factors (e.g., programs that target young people in low-income households). Much of segmentation relates to individuals whose behavior puts them at a higher risk of HIV transmission: MSM, IDUs and sex workers. To single them out as groups in highly visible ways as the focus of HIV prevention work, further stigmatizes them. Moreover, such an approach inadvertently can send the message to the general public that the risk of HIV/AIDS is limited to these groups rather than to particular behaviors, thus causing others to disregard messages on the dangers of the virus. What then is the solution for this dilemma? Everything we know from epidemiology argues in favor of segmentation, especially in the early stages of the epidemic when infection is limited primarily to subgroups. Interventions can be designed to use channels that reach these groups without drawing the attention of the general public. For example, La Sala program is operating in several Central American countries that provides a safe haven for sex workers. The program establishes a house for their exclusive use in the neighborhood near their work; the sex workers can drop by to have a cup of coffee, cook a meal, read a magazine, and socialize with others. La Sala also provides information, free condoms, counseling, and referrals to medical and social services. Similarly, the most effective outreach programs for MSM are those designed and implemented by members of this group, who know how best to reach others. Kippax and Race (2003) note that gay groups in developed countries have become agents in the national response to HIV/AIDS, using their knowledge of epidemiological/medical risks to adopt behaviors that confer protection. Outreach programs for IDUs must find their intended audience where they congregate—often in the streets— and communicate with them one-on-one or in groups. (4) Incorporate Theory into P rogram Design: Strategic communication must be theoryProgram based. Although the word “theory” has ponderous academic connotations, in its simplest form it explains how a program is expected to bring about the desired change and can reveal hidden assumptions. Either implicitly or explicitly, nearly all interventions are based on theory (King, 1999). One challenge in using theory in the design of HIV/AIDS programs is selecting or identifying the most appropriate one for a certain audience. We revisit the questions of behavior change theory and the paradigm shift in relation to HIV later in this chapter. (5) Use R esearch throughout the P rocess, from Design to Evaluation: Strong programs Research Process, are built on evidence-based decision-making. The types of research required in strategic

Strategic Communication 35

communication fall into the conventional categories of formative, process, and summative (Box 2-1). Not all programs will have the resources necessary to conduct research at every stage. It is nonetheless useful to recognize the full range of research and evaluation that potentially guide the design and mid-course corrections for a program, in order to decide which types of interventions will potentially be most useful and cost-effective. Box 2-1: T ypes of R esearch Needed to Guide Decision-making Types Research Formative research includes a series of quantitative and qualitative techniques used to learn more about a problem in a particular social context (Debus, 1986; Valente, 2002). Problem analysis reveals various levels of causation, as well as the manifestation and outcomes of the problem. Specifically, formative research is important for identifying the extent of the problem in a given population, or segments of the population most affected, and for finding factors that explain its occurrence, existing levels of knowledge and attitudes toward the situation, barriers to action, and related information. Formative research is conducted early in the project life cycle and guides decision-making on design and implementation. It can and should be carried out with each new element of the program, even if these are brought in later. The pretesting of communication materials and tools constitutes one type of formative research. Before finalizing a given communication material, tool, or media program, program staff test it in near-final form among members of the intended audience for comprehension, aesthetic appeal, cultural acceptability, and related factors. Also, very important is testing the acceptability of the tool by implementing it with organizations and their fieldworkers, as well as with communitylevel gatekeepers, the tertiary audience in the participation analysis for strategic communication (Box 2-4). Operational research is generally required with fieldworkers because they are the ones who must manage the materials in the field. Based on the results, the creative staff then modifies the materials before final dissemination. Although pretesting can greatly enhance the effectiveness of communication materials and tools, too often programs neglect to pretest or they do so in a hasty fashion without extracting the full benefit from the exercise. Process evaluation consists of both quantitative and qualitative research methods used to track how the program is implemented and how well it is received (Rossi et al., 1999). One common approach is to compare the activities outlined in the plan of action with those actually implemented at the field level. Process evaluation also measures the reaction of the target population to a given communication program once it has been launched, thus identifying areas in need of mid-course correction. Client satisfaction is an often-studied element of process. In short, process evaluation measures “what has been done” and “how well it has been done,” but not what changes have occurred because of it. Program monitoring is one form of process evaluation that tracks outputs, either in terms of activities completed (e.g., number of brochures produced, number of talks given) or actual service utilization (e.g., number of youths attending a given rally, number of new visits to a VCT clinic). This type of monitoring allows one to determine the extent to which the actual program conforms to the original implementation plan, and it gives some evidence of audience response in the form of attendance or clinic visits. Summative evaluation measures the extent to which a program achieves its objectives. Depending on the study design, it may also demonstrate causality (the extent to which the program under (Box 2-1 contd.)

36 Strategic Communication in the HIV/AIDS Epidemic (Box 2-1 contd.) study was responsible for the behavioral outcomes observed). Without summative evaluation, it is impossible to determine whether or not a given program has been effective. One common fault in designing programs is to assume that summative evaluation only “comes at the end.” Although the post-test or follow-up data are collected well after the program has been implemented, the evaluator(s) should decide upon the design from the outset of the program to ensure the availability of the necessary data to establish impact. Programs differ in the financial and human resources they have available and are willing to devote to these different types of research. Indeed, a common underlying tension among program designers and evaluators is that research and evaluation compete for funds with the design and implementation of a program. Yet savvy program administrators realize that the best programs result from using research to inform and improve the intervention at all stages along the process. Evaluation requires a knowledge base and skill set that would fill a separate book. We refer readers to two useful references on this subject (Bertrand and Solis, 2000; UNAIDS, 2000a) but do not attempt to address this topic in this book. Source: See citations mentioned in the box.

(6) Use Strategic P ositioning: Communicators use positioning to determine the best apPositioning: proach to motivate audiences to change or adopt a specific behavior. Positioning establishes in the minds of the audience an image of the desired behavior that helps them remember it, learn about it, act upon it, and advocate for it (Piotrow and Kincaid, 2001). As O’Sullivan et al. (2002) explain, effective positioning involves communication on a program, product or service that: l l l l

resonates with the audience, differentiates from the competition, stands out as better than the known alternatives, and provides a benefit that is worth the cost or effort.

Whereas some might consider this idea of strategic positioning—and the closely linked concept of “branding” or establishing a long-term identity—to be exclusively in the domain of commercial marketing, in fact, it can be equally applicable in social development communication. Positioning creates a memorable cue for the audience to know why they should adopt a behavior. It shapes the development of messages and the selection of channels. In addition, it ensures that messages will be consistent and that each communication effort will reinforce other activities for a cumulative effect (O’Sullivan et al., 2002; Piotrow and Kincaid, 2001). (7) Adopt the Entertainment–Education Approach: As audiences around the world gain greater viewer sophistication and have access to more media channels, health communication must be able to compete for viewer attention with high quality, entertaining programing. In response, communication specialists are turning increasingly to “entertainment–education”

Strategic Communication 37

(E–E) as a means of reaching millions with attention-grabbing messages or emotion-charged drama. E–E continues to grow in popularity, precisely because it captures the interest of the audience as it delivers socially-beneficial messages (Jacoby and Fokkens, 2001; Piotrow and de Fossard, 2003; Singhal and Rogers, 1999). Drama has more effect than many other forms of communication because it tells an engaging story, it involves the audience emotionally, and it depicts changes in characters with which the audience identifies (Kincaid, 2002). The empathic emotional response in the audience is the motivational force that induces members of the audience to reconceptualize the central problem depicted in the drama, and to resolve it in their own lives, using lessons learned. E–E not only takes advantage of “star power,” but also creates celebrities out of relatively unknown actors. In Nicaragua, the Puntos de Encuentro program created a television series Sexto Sentido on adolescent reproductive health topics that became one of the most popular TV shows in the country. Nicaragua had no well-known actors, so they recruited high school and university students. Once the show was on the air and became a hit, the actors became celebrities. When they went on tour to different cities and visited high schools to talk about the themes raised in the show, young people would swamp them with requests for autographs. People on the street would stop them and viewers would send them fan mail asking to be their friends, some proposing dates, others asking for advice because fans considered them as role models. UNFPA chose “Alejandra” (who used emergency contraception after having unprotected sex with someone she did not know) and “Angel” (the openly gay character in the show) as local celebrities to be their goodwill ambassadors. E–E is by no means limited to the mass media. It is an indispensable tool in community mobilization, where crowds congregate precisely on the hope of being entertained by streettheater troupes, a pop music group, puppeteers, or an engaging spokesperson. Whereas celebrity status is not essential for strategic communication, strong creative design is key to delivering messages with the greatest potential impact. Good scriptwriters, actors, and other creative artists sometimes resist the systematic approach used in the design of strategic communication for health and development purposes (for example, using pretesting as a basis for developing and changing scripts and characters). Yet, most will come to agree to these requirements if they are given adequate explanations for the rationale or they are involved as observers in the process (de Fossard, 1996; 1998). (8) Establish Quality Standards: To be effective, a communication program must be carefully designed and implemented. In the case of mass media, this requires the use of skilled, creative staff and good production facilities. Moreover, communication materials need to be pretested for attractiveness, comprehension, cultural acceptability, and related factors. With respect to community-based programs, personnel must be well-trained and have the appropriate interpersonal skills to interact effectively in group settings. They need to arrive when they say they will, use participatory techniques to engage the community, stay on topic, and use appropriate communication supports in a professional way. The process of achieving quality takes different forms. Few, if any, social development agencies have a staff of creative talent available for the design and production of communication

38 Strategic Communication in the HIV/AIDS Epidemic

programs in multimedia formats for multiple levels. Rather, most organizations depend on one or more key staff to coordinate the creative process, including contracting with local ad agencies or recruiting the talent needed to produce specific communication products (e.g., TV spots, radio programs, printed materials, and so forth) (Greenberg et al., 1996). In terms of community-level activities, keys to quality include hiring and retaining people with excellent qualifications for IPC/C and motivation of groups through interactive methods. Additional keys to quality in the context of clinic facilities include staff who are sensitive to client needs and fears, treat clients with dignity and respect, provide accurate information, ensure confidentiality, and give hope. (9) Use Multiple, Mutually R einforcing Channels: The question of “what channel is the Reinforcing best to use” is clearly outdated. In the world of strategic communication, programmers combine different communication vehicles: mass media, community mobilization, and IPC/C. Within each category, they may employ multiple channels, such as women’s groups, church groups, sports events for youth, and others. Ideally, the different channels must send mutually reinforcing messages. Actors and actresses on TV soap operas can serve as valuable role models for specific behaviors that clinic personnel should perform in VCT. Public service announcements (PSAs) on radio can provide the same information as print materials distributed in clinics and schools. The multiple factors that influence the choice of communication channel are outlined in Box 2-2. (10) Design Client-Centered P rograms: The program should cater to the interests of the Programs: intended beneficiaries rather than to those of the people designing and implementing it. For this reason, it is essential to involve the audience in program design through formative research or other processes such as direct participation in story design. Messages and stories must resonate with the aspirations, fears, and needs of the group. Perhaps the greatest challenge lies with service delivery programs in which health care personnel are overworked and close to burnout due to the additional caseload of HIV and AIDS patients. Even in such settings, those responsible for programs must find ways of shifting toward client-centered services, which are more convenient, less time consuming, and more polite (Piotrow and Kincaid, 2001). (11) Ensure P rograms are Benefit-Oriented: HIV/AIDS communication must speak directly Programs to the needs and interests of the audience. Communicators and communication tools must stress how the behaviors they promote will directly benefit both individuals and communities, in terms of quality, convenience, affordability, or response to an important felt need. Vague appeals to “national interest” carry little weight. Rather, messages must convey to the listeners why they or their families will be better off by following a certain course of action (Piotrow and Kincaid, 2001). (12) Ensure P rograms are Service-Linked: Communication is not an isolated component Programs of a national, regional, or local program. Rather, it is a means of translating concepts from a national strategy into action at the field level. As the HIV/AIDS epidemic evolves, the range

Strategic Communication 39 Box 2-2: F actors Influencing the Choice of Communication Channels Factors Complexity of the Issue: Although IPC/C tends to be labor-intensive, it is by far the most appropriate type of communication for certain situations. For example, VCT centers devote substantial resources to pre- and post-test counseling, precisely because a confidential, one-on-one dynamic is important in this emotionally charged service. Sensitivity of the Issue: Highly sensitive issues may not lend themselves to the use of mass media. For example, Takalani Sesame in South Africa introduced an HIV-positive muppet, Kami, as part of the cast of characters (Segal et al., 2002). Via both radio and TV, Kami provides young viewers with age-appropriate knowledge of HIV/AIDS and attempts to reduce stigma toward PLHA. However, the mass media do not address the sensitive issues of child abuse in relation to HIV/ AIDS; rather, these topics form part of the curriculum for outreach activities, mediated by trained adults. Literacy: Whereas certain segments of the population may be highly literate (e.g., students participating in school programs), others may not be able to read and write—a factor that would rule out print materials with extensive text. Since levels of literacy tend to be lower in rural than urban areas, radio serves as an excellent medium for reaching such audiences in many countries. Desired R each: Programs aspiring to national coverage or even large segments of the general Reach: public often use some form of mass media. By contrast IPC/C is more appropriate when the message needs to be tailored to the individual. Prevailing Social Norms: Countries differ greatly in their openness and willingness to deal with the behaviors linked to HIV transmission. For instance, many countries still have constraints on airing condom messages, while others have overlooked existing laws and norms due to the urgency of the HIV/AIDS threat. For example, in Thailand, as part of the initiative to ensure 100 percent condom use in brothels, national mass media carried messages encouraging men to use condoms when visiting sex workers despite the fact that commercial sex work is illegal in that country (Rojanapithayakorn and Hanenberg, 1996). Media Habits and P references of the Intended Audience: Findings from formative research will Preferences indicate the extent of access that a given audience has to different media (radio ownership, TV ownership, opportunities for listening/viewing elsewhere), as well as its media habits (viewing, listening, reading). Moreover, formative research identifies preferred viewing times, favorite stations, and favorite programs. Surveys can identify memberships in different types of community activities that could serve as vehicles for behavior change communication (BCC) or ask about access to computers and Internet. Cost: The costs of different communication channels vary by type and also by country. TV production and the purchase of TV airtime are often beyond the budgets of organizations, even though TV may be cost-effective in terms of unit cost per person reached. Radio is much less expensive and may reach specific audiences (e.g., youth, residents in rural areas). Thus, cost plays a determining role in the choice of media. Source: See citations mentioned in the box.

of services expands: counseling on prevention, STI diagnosis and treatment, VCT, treatment of OIs, nutrition counseling, PMTCT, and, in a growing number of countries, appropriate use of ART or HAART. In addition, the number of other services for PLHA is growing, such

40 Strategic Communication in the HIV/AIDS Epidemic

as home care, psychosocial counseling, and education programs for OVC. Communication is a primary vehicle for informing the public about these services, creating demand for them, reducing stigma, and encouraging adherence to testing and treatment. Strategic communication must link people to the services they need. By the same token, those designing communication programs must ensure that the services they promote are consistent with the services actually available to the public (Piotrow and Kincaid, 2001). (13) Incorporate P articipation and Interaction: Evidence abounds that people learn more Participation when they participate actively than when they passively absorb information. Whereas earlier theories of communication described one-way communication between sender and receiver, many programs today are developed with the involvement of the intended audience, and operate on the basis of two-way or multi-directional communication. Even where mass media are involved, the audience is encouraged to call in questions, get more information through a hotline, write letters to the station, or enter a “chat room” on an issue through the Internet. Community-based events offer greater opportunity for direct interaction and participation. Programs can also foster greater participation in the clinic-based setting by coaching clients how to interact with service providers to get answers to their questions—a “smart client” approach. (14) Consider Cost-Effectiveness: Cost-effectiveness refers to measuring costs in relation to outcomes as a means of identifying strategies that yield the best return on the financial investment. It does not imply using the lowest cost alternative, if it does not provide results. One difficulty in establishing cost-effectiveness is the dearth of rigorous research, to date, on either the cost of HIV/AIDS communication interventions or their impact in specific settings. In the absence of exact numbers, planners can, nonetheless, make rough estimates in comparing the relative return on communication through different channels. To move from cost-effectiveness as a concept to a criterion for decision-making in HIV/AIDS programing, it will be necessary for the organizations to fund such work so researchers can refine their methods for measuring cost-effectiveness in relation to communication interventions. With greater efforts in this type of research, we expect in the future to be able to more accurately respond to the question: “How can additional funds be allocated with the greatest effect to achieve and sustain healthy behavior?” The 14 elements of strategic communication programs, outlined above, describe the stateof-the-art approach that has worked very effectively in the realm of international family planning and other social development programs. Yet the urgency of the HIV/AIDS epidemic and the challenges it presents to sustained behavior change require us to further refine our approach to strategic communication as it relates to HIV/AIDS. At the heart of this refinement is a shift in paradigm, resulting from a gradual evolution in behavior change theory.

Strategic Communication 41

A Paradigm Shift from Behavior Change to Social Change Theories, refined into models and frameworks, are useful in both the design and the evaluation of communication programs. In an in-depth review of behavioral theories relevant to sexual behavior change, King (1999) identifies and describes in detail the major theories used to date. In terms of individual change, the best known theories are the health belief model, reasoned action, social learning, stages of change, and the AIDS risk reduction model. In terms of design, theories identify important variables and specify how these variables work together to produce a desired outcome (Witte, 1998). For example, the health belief model specifies that preventive health behavior is influenced by five factors: (i) perceived barriers to performing the recommended response, (ii) perceived benefits of performing the recommended response, (iii) perceived susceptibility to a health threat, (iv) perceived severity of a health threat, and (v) cues to action (Janz and Becker, 1984; Rosenstock, 1974). These constructs become the basis on which to design specific interventions that may consist of messages via mass media or interpersonal channels and skill-building exercises in community settings. In evaluating the program, researchers test the variables specified in the models to determine whether or not individuals are engaging in the desired behaviors, and if not, which variables in the model explain why they are not (Witte, 1998). For example, members of the intended audience may have increased their awareness of HIV/AIDS, believe that HIV/AIDS is a serious threat to their own health, and even believe that condoms are an effective means of protection. Yet they may not have the power or skills to be able to undertake the behaviors needed to protect themselves (e.g., negotiate condom use). Over the two decades since HIV/AIDS first emerged, theories to explain behavior and social change have evolved markedly. Early in the epidemic, many practitioners assumed that simply giving correct information about transmission and prevention would lead to behavior change. This model proved naïve. “Second generation” interventions, which continue to inform programs today, drew on psychosocial and cognitive approaches that educated individuals in practical skills to reduce their risk of infection (Kalichman and Hospers, 1997). In recent years, social scientists have come to recognize that socio-cultural factors strongly influence complex health behaviors, including sexual behavior (Kippax and Race, 2003). Beyond an individual’s own social network, there are larger structural and environmental determinants that also affect sexual behavior, such as living conditions related to one’s employment (e.g., mining camps that require men to spend substantial periods of time away from home) (Sweat and Denison, 1995). Whereas early theory work tended to focus on behavioral change at the individual level, the field has moved toward theories and models that focus on social groups/communities and on larger contextual factors. With respect to theories that take into account the larger social context, King (1999) cites the diffusion of innovations, social influence (social inoculation), social networks, and gender/ power. In addition to this arsenal of theories, several authors have emphasized the role of structural and environmental factors (Sweat and Dennison, 1995) as well as policy and economic issue (Carael et al., 1997) as determinants of behavior change. Interventions of this

42 Strategic Communication in the HIV/AIDS Epidemic

type target organizations, communities, and policy (King, 1999). One widely cited example is the policy for 100 percent condom use brothels in Thailand, credited with reducing HIV incidence throughout Thailand in the early 1990s (Rojanapithayakorn and Hanenberg, 1996). During the first decade of the AIDS epidemic, western social scientists generated the majority of the theory work related to HIV/AIDS. Indeed, many researchers saw the applicability of paradigms created in relation to North America or Europe to the problem of HIV/ AIDS in developing countries. Whereas the conditions differed markedly, certain factors such as risk perception and self-efficacy seemed equally relevant to developing and developed countries. Fishbein, one of the leading behavior change theorists, argues that we do not need “new” theories of behavior and behavior change, but rather for investigators and interventionists to better understand and correctly utilize existing, empirically-supported behavioral theories in developing and evaluating behavior change interventions (Fishbein, 2000). However, others have taken a more socio-political point of view, stating that concentrating on the western, individual-oriented theories has often led us to addressing the media-rich “haves” rather than the harder-to-reach “have-nots,” inevitably increasing the gap between such segments of society. In addition, when the “have-nots” do not adopt certain behaviors, they are often blamed for the failure of a program (Figueroa et al., 2002; Robinson and Levy, 1986; Tichenor et al., 1970). “Personal and individual blame is to some extent a natural consequence of doing individual, psychological research on problems that are fundamentally social problems” (Caplan and Nelson, 1973). The HIV/AIDS epidemic has driven this need for new thinking because it usually begins with the “haves” who are mobile and who have money for multiple sexual partners or intravenous drugs. However, within a few years, it silently penetrates the much larger communities of “have-nots” who are then asked to change their behavior to confront an enemy they cannot see nor understand, an enemy that infects their bodies, as well as their social organization and coping mechanisms. While the “haves” may have the education and understanding, as well as the economic resources to seek counseling and care that leads to behavior change and even prolonging their lives with ART, the “have-nots” are not in such a position. They are blamed and stigmatized for being infected. In addition, during the past decade, numerous researchers have challenged the individuallyoriented social cognitive theories on other grounds. The first major criticism relates to the applicability of these theories to the social and cultural context of developing countries, in general, and of Africa in particular (Airhihenbuwa and Obregon, 2000). For instance, program planners have often expected members of the target audience to adopt behaviors that are inconsistent with cultural norms, with few clues of how to counter the inevitable social consequences of such bold action. “Culture” has often been viewed as a negative force or a barrier to change instead of an attribute that can work toward positive ends. Amaro (1995) has argued that most theories have focused on the individual or two-person unit, downplaying the importance of culture in influencing people’s construction of social reality and decisions regarding safer sex. A UNAIDS (1999a) publication based on consultations with communication researchers and programmers in a number of developing countries similarly concluded that most HIV

Strategic Communication 43

communication programs are shaped around theories and models that do not meet regional or local needs. The publication maintains that these theories have been used to explain HIV/ AIDS-related behavior in western countries, but relatively few have been tested or validated in developing countries, with a few notable exceptions (e.g., the diffusion of innovations work of Astatke and Serpell, 2000; Rogers, 1995). A second major source of criticism relates to the issue of intentions, which assume selfagency or self-efficacy (the ability of the individual to take control of his or her behavior) and action. Kelly et al. (2001) argue that cognitive decision theories of behavioral change do not address the contingencies that bring intentions to fruition. Particularly in the field of sexual activity, cognitive self-agency models of acting are particularly inappropriate, because the individual does not necessarily have control over actions in this arena (e.g., unfaithfulness of the partner, financial destitution, separation of families for work-related reasons). Individuals simply may not be in a position to undo the circumstances that led them to the behavior in the first place. In real life, sexual mores, gender stratification, and gender role stereotypes operate powerfully to discourage men and women from practicing safer sex (Perloff, 2001). A third criticism relates to the implied rationality in many of these theories. That is, they assume that people are rational creatures who consider the costs and benefits of alternative actions and make careful use of information available to them. However, under social pressure, in the heat of the moment, or under the influence of alcohol and drugs, good intentions may give way to the motivations of the moment. Emotions and sexual arousal may overtake the best of intentions (Perloff, 2001). As Kelly and Kalichman (1995) point out, “insufficient attention has been paid to the many psychological, relationship, cultural, affective-arousal, and situational influences that surround and form the context for human sexual behavior.” Indeed, criticism along these lines led UNAIDS to develop an alternative framework that refocuses communication interventions on the basis of five key contextual domains: government policy, socio-economic status, culture, gender relations, and spirituality (UNAIDS, 1999a). The key principles of this document are as follows: l l

l l

l

Sustainability of social change is more likely if the individuals and communities most affected own the process and content of communication. Communication for social change should empower, be horizontal (versus top-down), give a voice to the previously unheard members of the community, and be biased towards local content and ownership. Communities should be agents of their own change. Emphasis should shift from persuasion and the transmission of information from outside technical experts to dialogue, debate, and negotiation on issues that resonate with members of the community. Emphasis on outcomes should be beyond individual behavior to social norms, policies, culture, and the supporting environment.

According to Scalway (2002a), these principles are influencing the major donors and international organizations. For example, USAID, DFID, UNICEF, and a consortium of Nordic nations now have policies or strategies that emphasize the social change approach.

44 Strategic Communication in the HIV/AIDS Epidemic

However, those working in HIV/AIDS face a dilemma. On the one hand, many accept the principles outlined above and recognize the importance of community-driven social change and its effectiveness in the long run. On the other, they are acutely aware, given the urgency of the epidemic, that participatory processes with communities can be labor-intensive and time-consuming. Their parliaments and boards of directors often demand to see quick results with taxpayers’ or foundations’ money. Those responsible for combating HIV/AIDS must find effective means of reaching the largest possible number of people with information and motivation that could save their lives. Our proposed approach builds on the elements of strategic communication, outlined earlier in the chapter. To effectively combat HIV and AIDS, we must develop a more inclusive process than exists in most countries today. The new thinking must respond to the critics that call for greater community empowerment, but it must also recognize the need to go to scale as quickly as possible. To this end, we propose three principles that must inform the new thinking on communication programs for HIV/AIDS: (1) T arget Social Norms as well as Individual Behavior: Much of the HIV/AIDS prevention Target work, to date, has focused on individual behavior, for instance, the ABCs. Yet many have come to realize that the “self” or individual cannot be separated from his/her social environment. Figure 2-4 captures this holistic view of individual behavior as a product of multiple, overlapping social and environmental influences (McKee et al., 2000a). This model illustrates the immediate influence of family, peers, and community on the individual or self. The series of rings beyond this immediate context of family, peers, and community describe elements that are essential to behavior change, along with factors that will condition that change. Specifically, people need accurate and timely information about HIV and AIDS and other health and development problems, shown in the next concentric circle. With such information, some individuals, groups or communities may be empowered to act. However, such people are usually those who are already motivated or empowered through education and other programs. For most people, information is not enough and they require motivation through strategic communication, such as effective counseling, entertaining radio, or TV programs. If done well, such communication will foster individual attitudinal and behavior change, as well as social norm change. However, motivation may not be enough. Few young people in the countries hardest hit by HIV/AIDS have the power to negotiate the time and conditions for having sex, including the use of condoms. They need the ability to act, shown in the fourth ring, in particular circumstances that pose a threat to their health and survival. Such skills are sometimes called psychosocial life skills or emotional and social skills such as problem-solving (in social relationships), decision-making, negotiation, critical and creative thinking, interpersonal communication, and other relationship skills such as empathy, and coping with stress and emotions. Many of these skills involve group interaction and collective efficacy. In fact, psychosocial life skills are acquired through interactive, group learning. The originators of this model emphasized life skills because they are essential elements of protection against HIV/AIDS.

Strategic Communication 45 Figure 2-4: Behavior Development and Behavior Change in the Social and Environment Context

Source: McKee et al., 2000a

In fact, the model emphasizes behavior development of both children and adolescents who have not yet begun practicing risk behaviors, as well as change for those who are already practicing them and may be able to change with the help of new skills, along with information and motivation. Finally, the outer ring of Figure 2-4 represents the overall social and environmental context consisting of macro elements that impede or accelerate behavior and social change, such as policies/legislation, services, education systems, religion, politics, economics, the physical environment, and the organizational environment. Communication specialists must take these factors into consideration in designing programs, and they must work in concert with others to bring about positive changes in relation to these macro-level factors. As shown in Figure 2-4, values—the composite expression for attitudes, beliefs, social norms, or world views—cross-cut the entire model of concentric circles and anchor individual and social behavior. In-depth research and participatory interaction with people are the means of developing an understanding of values for purposes of communication planning. The implication of the model in Figure 2-4 for strategic communication is that programs must not focus exclusively on individual change, but must aim to influence the social context

46 Strategic Communication in the HIV/AIDS Epidemic

in which the individual operates. Programs must target social norms, not just individual behavior. The model also underscores a second key concept for improving the effectiveness of strategic communication programs: expanding beyond ad hoc interventions to a coordinated social movement. A more detailed model that captures the need for comprehensive programs that work at multiple levels is the “Pathways Communication Model for HIV/AIDS,” presented in Figure 2-5. This model draws on the conceptual framework for the USAID-funded Health Communication Partnership, which has a large HIV/AIDS component. The pathways model reflects the concept of mutually supportive channels of communication, aimed at different levels: the sociopolitical environment, service delivery systems, communities, families, and individuals. It also outlines the initial outcomes and behavioral outcomes that precede actual change in HIV transmission or social norms relating to the care and support for PLHA. In short, it summarizes the multiple elements that together lead to the desired long-term outcomes. (2) Expand Beyond Ad hoc Activities to a Coordinated Social Movement: The rising incidence of HIV in many African and Asian countries has intensified the commitment of numerous countries to deal with this epidemic and has jolted others to begin taking action. They recognize the urgency to act, though some feel overwhelmed by the magnitude of the challenge. The first response of many countries is to design and implement interventions to reach groups who are most vulnerable to HIV infection. However, many stop short of a plan to effectively scale up the national response through social mobilization. Figure 2-6 presents a model for strategic communication planning that builds on the PProcess (shown in Figure 2-1). This planning model may be applied to the processes of social change. The revised P-Process differs from the original in four important ways: (i) It expands on the concept of analysis by explicitly including both situation assessment, and communication and audience analysis. Situation assessment involves the collection and review of relevant epidemiological and social data. By contrast, communication analysis is an exercise to identify both the behavior and values of the audience, which is specifically geared to strategic communication initiatives. (ii) It shows the concepts of “participation” and “capability strengthening,” to be integral components of the process. (iii) It broadens the language and concept of “strategic design and development” to include an understanding of its possible application to community mobilization and IPC/C, as well as mass media. (iv) It shows that the results from the initial cycle should be fed back into the program in subsequent cycles, informing the programatic assumptions in the analysis, at any level, or the strategic design, which may have to change. Details of each step of the process are provided in Box 2-3. As is evident, the concepts of “management” of the whole process and continuous “feedback” are added here to the other cross-cutting concepts of participation and capacity strengthening. The revised P-Process is more explicit than the original in signaling the importance of mobilization for social change, which requires the involvement of many organizations, agencies

Source: Adapted from the Health Communication Partnership (2002).

Figure 2-5: P athways Communication Model for HIV/AIDS Pathways

48 Strategic Communication in the HIV/AIDS Epidemic Figure 2-6: R evised P -P rocess Revised P-P -Process

Source: Health Communication Partnership, 2003b

and people at the national, state, district, and community levels. One process that forms part of the communication analysis is participation analysis that identifies the different individuals and institutions that should be involved. It consists of “segmenting” all of the social actors who may influence or want to own the direction of the program. Box 2-4 defines the different actors who may have a role to play in advocacy efforts at the national, state/provincial, and district level as well as in Behavior Change Communication (BCC) at the community level.

Strategic Communication 49 Box 2-3: P -P rocess (revised)—Steps in Strategic Communication P-P -Process (1) Analysis l

l

Situation Analysis: Severity and causes of health, social and environmental problems. Identify social, cultural and economic factors inhibiting/facilitating desired social changes. Develop problem statement. Identify formative research priorities and carry out. Audience and Communication Analysis (a) Participation Analysis National to district levels levels:: Identify partners and allies for policy change and strengthening service delivery. Community level level:: Segment primary/secondary/tertiary audiences, plus fieldworkers/change agents. (b) Social and Behavioral Analysis Individual level level:: knowledge, attitudes, skills, and behaviors. Community level level: social networks, socio-cultural norms, collective efficacy, and community dynamics, including leadership patterns. Ser vices level Services level:: availability of communication materials, capacity for interpersonal communication and counseling. Environmental level: public opinion, existence of action groups, media engagement, policies and legislations affecting interventions. (c) Communication and T raining Needs Assessment Training Media access and use of participants, capacity of media practitioners, organizational capacity of partners and allies. Resources needs.

Throughout process:

Participation: Include national, district, and community level

Capacity Strengthening: Ensure capacity from national to community level

(2) Strategic Design l l l l l

Establish communication objectives. Develop main communication approaches and positioning. Determine budget and key strategies: channel and media selection. Develop an implementation plan for key activities, include roles and responsibilities of partners and allies. Develop and monitoring and evaluation plan.

(3) Development and T esting Testing l l

Develop and test concepts, processes, messages, stories, materials. Revise and pilot test final versions and adjust, as needed.

(4) Implementation and Monitoring l l l l l

Monitoring and F eedback: Feedback: Manage and facilitate, track outputs and ensure timeliness, quality and learning processes

Produce and disseminate final materials. Conduct training of trainers and of fieldworkers/change agents. Mobilize key partners, allies, and communities to implement plan. Manage and monitor program participation and outputs. Adjust program materials, activities, procedures, as needed. (Box 2-3 contd.)

50 Strategic Communication in the HIV/AIDS Epidemic (Box 2-3 contd.) (5) Evaluation and R eplanning Replanning l Assess outcomes and impact on knowledge, attitudes, skills, behavior. l Disseminate results to partners, counterparts, stakeholders. l Determine needs for follow-up and/or extension. l Revise/redesign program processes, materials and activities. Source: Health Communication Partnership, 2003b Box 2-4: P articipation Analysis—P otential Actors for Advocacy and B CC Participation Analysis—Potential BCC Advocacy (National/State/P rovince/District) (National/State/Province/District) Partner: An institution, association, ministry, corporation, or group that serves as a resource (financial, technical, human, or material) for collaboration with the core partners in achieving the overall objectives of a designated program area, usually for the full length of the program. Ally: An institution, association, corporation, group, celebrity, spokesperson, or politician that serves as a resource (financial, technical, human, or material) for collaboration with the core partners in achieving at least one of the objectives in a designated program area, often being engaged for a specifically defined time. Gatekeeper: An authority, powerful individual, institution, or association—at the national, regional, or district level—that influences the policy or legal environment (social, cultural, religious, political, or economic) that either facilitates or inhibits behavior and social change. Gatekeepers may allow or inhibit program interventions to take place through various national, regional, or district channels. Programs may bring them on board as partners and allies through advocacy, or they may succeed in “neutralizing” them. Behavior Change Communication (Community Level) Primary Audience: Those whose behavior is the focus of the strategic communication objectives. Secondary Audience: People who directly relate to the primary audience through frequent contact and who may support or inhibit behavior change in the primary audience through their influence. The strategic communication objectives often must focus on them directly for changes to take place in the primary audience. Tertiary Audience (Community-level Gatekeepers): Local community groups, institutions, or individuals who may support or inhibit behavior and social change in a community by allowing or disallowing an intervention to take place. These people control the local social environment, communication channels and decision-making processes, and have a great influence on local social norms. Fieldworker or Agent: A natural agent of change in a community, usually representing an institution or organization that may have similar goals for behavior and social change and who may be brought on board for communication program purposes through involvement in training, planning, and implementation.

Participants in the advocacy program are often an audience for advocacy themselves. Once persuaded to become partners or allies, they are natural advocates for the cause. Some may

Strategic Communication 51

be “gatekeepers” who need to be convinced in order to communicate to the general population (e.g., media gatekeepers) or to a specific group of people such as youth in school (e.g., education authorities). This type of concerted advocacy can lead to the involvement of a wide range of operational partners and shorter-term allies in a multi-sector response—“social mobilization” for HIV/AIDS prevention, care, and destigmatization. Box 2-5 provides an example of a participation analysis in relation to female sex workers (FSWs) that proved useful in planning a large-scale communication program in the state of Maharashtra, India. It presents part of the results of a planning process for an integrated HIV/AIDS communication plan in that state. Stakeholders in the planning process included service providers, government personnel, and NGOs who worked directly with various groups— youth, sex workers, truckers, IDUs, MSM, and representatives from those groups. The “sex worker group” analyzed the HIV/AIDS situation in the state and drew on its own knowledge of the issues to complete this participation analysis. Box 2-5: P articipants in P rogram for F emale Sex W orkers (FSWs), Maharashtra, India Participants Program Female Workers Advocacy (State or District Level)

Behavior Change Communication (Community Level)

Partners (Operational)

MSACS, MDACS, Avert, Women’s Commission, Local NGOs, Ministry of Health/ Home Affairs, NACO, donors, Organization of SW, Mahila Aarthik Vikas Organization

Primary Audience

Bar girls, non-brothel-based FSWs, brothel-based FSWs, regular partners

Allies (Event or Function-specific)

Condom manufacturers, Chalak Malak Sanstha Organization, lawyers associations, childcare organizations, local press/ media, vocational training institutions, folk artists, Truckers Federation

Secondary Audience

“Madams”, clients (general public), pimps, petrol pump owners/employees, beauty parlors owners/employees

Gatekeepers

Police dept., local health authorities, women activist groups, hotel/bar/lodge associations, political parties

Tertiary Audience (Community Gatekeepers)

“Fixed” taxi drivers, lodge owners, mobile vendors, local police, Yuvak Organization, religious leaders, local elected members

Fieldworkers Peer educators, outreach workers/volunteers, health or Agents care providers, counselors Source: Health Communication Partnership, 2003c

52 Strategic Communication in the HIV/AIDS Epidemic

Participation may go beyond articulating detailed plans. Participants may also be involved in the formulation of materials, including their messages and stories. For instance, in an HIV/AIDS program for young people, adolescents can be involved in formulating radio and TV programs, dramas, or stories for comic books alongside researchers, writers, artists, programmers, and media gatekeepers (see Plate 2-1). They can become part of the process of articulating objectives and designing stories and characters—in other words, full partners in the process much before the usual step of pretesting. This is the “paradigm shift” that can happen when a participation analysis is carried out before the design process begins.

Plate 2-1: Adolescent participation in Bangladesh ARH design workshop. (Credit: CCP)

In summary, participation analysis provides an inventory of potential partners in a societywide movement to combat HIV/AIDS. Although the job of bringing together these partners may fall to the national or state AIDS control program, often communicators can play a key role in recruiting these groups to participate in the national response. Chapter 3 discusses social mobilization in more detail.

Strategic Communication 53

(3) Bring Community-Level Activities to Scale through a Linkage with Mass Media: Community mobilization is a natural part of social mobilization. However, communities must be involved in this national movement as partners, not as targets of a campaign. Experience to date has shown several ways of enlisting communities as partners in the fight against HIV/AIDS, which is elaborated on in greater detail in Chapter 3. Programs should use an expansive definition of “communities”: (i) communities defined by residential proximity, (ii) groups brought together by common interests or beliefs, such as religious communities, and (iii) communities of vulnerable groups, such as FSWs, MSM, and IDUs. As the response to the HIV/AIDS epidemic evolves—especially in the areas of testing, treatment, care and support—community initiatives take on renewed importance. Yet a major shortcoming of programs, to date, has been the disconnect between community initiatives, on the one hand, and mass media efforts on the other. Often, different organizations develop community-based and mass media interventions as two parallel but separate programs. This approach wastes much of the potential synergy to be gained from coordinating programs for these two levels. Another problem is the plethora of overlapping projects, tools, and processes to garner the participation of different communities in development efforts, which can lead to confusion and a waste of resources. A mechanism for coordination and synchronization of efforts is absent. As the epidemic continues to spread unabated in many countries, HIV/AIDS programs must go to scale. Pilot projects have proven useful in testing certain approaches, but we must identify ways of expanding their benefits to a larger portion of those in need. The mass media have a powerful reach and have proven to be effective in breaking the silence around HIV/AIDS—an essential first step to action at the individual, community, and policy levels. Still creating links between the HIV/AIDS communication via the mass media and community-based initiatives helps to deliver far greater impact. A number of programs are beginning to move in this direction. For example, the MARCH model, championed by CDC, links E–E programming through mass media with communitylevel initiatives (Galavotti et al., 2001). Similarly, a number of the programs with technical input from Johns Hopkins’ Center for Communication Programs join the mass media elements, often including E–E, with community-level work. For example, the Stop AIDS, Love Life program in Ghana demonstrates the power of linking mass media programming with community-level interventions as part of a coordinated, multi-sectoral movement to combat HIV/AIDS (see Chapters 3 and 4 for case studies of Stop AIDS, Love Life and other programs that link mass media and community elements).

Conclusion Strategic communication offers a powerful set of tools for designing, implementing, and evaluating programs. It provides guidance for both communication related to HIV/AIDS prevention, as well as treatment, testing, care, and support. Communication is not a set of

54 Strategic Communication in the HIV/AIDS Epidemic

isolated activities or something that a group of specialists do separately from others working on HIV/AIDS initiatives. Rather, it is the process for converting the national HIV/AIDS strategy into tangible interventions that effect people’s lives. In this chapter, we outlined the elements of strategic communication and a paradigm shift in its theoretical reference and framework. This provides structure to the design of communication programs and underscores the ideas presented in the remainder of this book. We have learned an enormous amount about communication during the first two decades of the HIV/AIDS epidemic, yet the epidemic continues to spread. In the absence of a vaccine or a cure, behavior change represents one of the very few means of stemming the epidemic. We must apply the most effective tools we have to this job, and strategic communication provides a valuable framework for the next generation of HIV/AIDS programs.

Chapter 3

Communication for Social and Behavioral Change Strategic communication provides powerful approaches for reaching national policymakers, local government officials, traditional and religious leaders, community leaders, and members of the general public to influence social norms and individual behavior. This chapter expands on the discussion begun in Chapter 2 regarding the need for advocacy, social and community mobilization, and BCC in the following sections: l l l l l

Advocacy to strengthen political commitment Social mobilization to bolster the national response Interventions to strengthen community responses Promoting the ABCs for safer sexual practices Communication to reduce stigma

Advocacy to Strengthen Political Commitment Rationale Uganda has had the most dramatic decline in HIV infection rates in the world. HIV prevalence peaked at around 15 percent in 1991 and declined to 5 percent as of 2001 (Hogle, 2002). President Museveni of Uganda has been given much of the credit for this success. He demonstrated an early and relentless resolve to fight HIV/AIDS, igniting the forces of Ugandan society—including all levels of government, NGOs, community-based and faith-based organizations, and other elements of civil society—to take on the fight (Green, 2001). Some have said Uganda was successful due to the natural course of the epidemic and people started to act based on a fear response to seeing friends and relatives dying. However, to counter this argument, the same has not happened in other high-prevalence countries and there have been some successes even in a few low-prevalence countries. For instance, Senegal has been recognized as another success story, albeit in a different way, as the infection rate only reached 1.1 percent in 1990 and has declined since 1997 to 0.5 percent at the end of 2001 (UNAIDS, 2002a). The fact that Senegal is a more

56 Strategic Communication in the HIV/AIDS Epidemic

conservative and religious society with nearly universal male circumcision and was attacked by HIV-2, rather than the more virulent HIV-1, may have contributed to its success. However, it is evident that behavior change did not come about in Senegal due to a fear response. Rather, as in Uganda, political and religious leadership supported AIDS prevention efforts boldly and at a relatively early stage (Green et al., 2003). Thailand and Cambodia (see Cambodia case study) demonstrated a similar resolve. In Thailand, the government strongly backed a 100 percent condom campaign in commercial sex facilities, which helped to trim new infections from a high of 140,000 during 1991 to 30,000 during 2001 (UNAIDS, 2000b). The record to date shows that where political, religious, and social leaders do not fully and openly back efforts to stem the spread of HIV early, their constituents remain in denial and the virus continues to spread unabated. India is a case in point where some government officials “proclaimed that AIDS was a foreign disease, and that the epidemic could never spread in a family-centered society” such as theirs (Singhal and Rogers, 2003). By the end of 2002, India had a prevalence rate of at least 0.8 percent with 3.82 to 4.58 million PLHA (UNAIDS, 2002a; UNAIDS, 2003). However, even in India some bold leaders have taken a stance on HIV/AIDS. Most recently the Chief Minister of Andhra Pradesh, a south Indian state of 76 million people with a growing HIV prevalence, has championed the cause in the fight against HIV/AIDS by breaking the silence and asking for concerted action by state personnel and partners. Leaders demonstrate political commitment by using their power and influence for a cause. Advocacy has been the major strategy to gain needed political commitment where it is absent or weak. Advocacy is a component of strategic communication that is too often ignored. Its dictionary definition is “verbal argument or support for a cause or policy,” such as that which is done by a lawyer in a courtroom. In international development work, it has been defined more comprehensively: Advocacy is a continuous and adaptive process of gathering, organizing, and formulating information into argument to be communicated through various interpersonal and media channels with a view to raising resources or gaining political and social leadership acceptance and commitment for a development program, thereby preparing a society for its acceptance (McKee et al., 2000b). Through advocacy, we attempt to influence a nation, state, or district to strengthen the fight against HIV/AIDS through changes in resource allocations, or policies and laws such as the provision of family life or life skills education in schools, the reduction of school fees for orphans, budgetary provision for adequate HIV testing services, condom availability in government health centers, the legal age of sexual consent and of marriage, and laws on discrimination against PLHA. In addition, advocacy can be employed to hasten the development of national policies on HIV and AIDS prevention, care, support and mitigation that help to create an enabling environment for all strategic interventions. However, action against HIV/AIDS need not await the finalization of policy. Consider the difference between Ethiopia and Uganda. The Government of Ethiopia began to develop a national AIDS policy in 1988, but the country remained rather inactive in fighting the

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epidemic for many years. The Government of Uganda did not begin such policy formulation until 1996, after years of concerted action and considerable success. Both governments approved their policies by the end of the decade (Stover and Johnston, 1999).

Formative Research The participation analysis described in the previous chapter, feeds into advocacy planning. In addition, answers to the following questions are needed to develop an effective HIV/AIDS advocacy program or campaign: l l l l l l l l l

What is the HIV prevalence and incidence, as well as main causal factors? What are the communication barriers? What is the level of denial by leadership and the causes for this? What are the present dispositions/attitudes/opinions of key leaders on HIV and AIDS? Do they share information with their constituencies? What has been the experience with political and other leadership support in comparable countries, provinces, regions, or districts? What is the level of stigma attached to having HIV and AIDS? Which policies, laws, and regulations either enable or create a barrier to an effective response to HIV and AIDS? What changes or additional policies or laws are needed? Which are the most effective channels or means of reaching key leaders? What is the projected effectiveness of various communication interventions, including how they can support a multi-sector response? What are the effects of decentralization on a possible response?

Audiences and Actors As discussed in the section on participation analysis in Chapter 2, the audiences for advocacy can be many and varied: l l l l l

the president or head of state, prime minister, cabinet, parliamentarians, key public servants, respected statesmen or stateswomen, religious and traditional community leaders, social and business leaders, women’s leaders, NGO leaders, and celebrities who may have a positive effect on public opinion.

These people should be identified at every level where change is needed—national, provincial/ regional, district, and sub-district. Advocacy efforts target these individuals in an effort to bring them on board to support HIV/AIDS programs whenever possible. Even better, they may become effective advocates for the cause. In other words, the original audiences may

58 Strategic Communication in the HIV/AIDS Epidemic

become the actors. In some cases, however, important gatekeepers may feel they cannot enter into the debate personally and may opt to be silent on issues, but not block the needed changes.

Strategic Approaches Who carries out advocacy? Often advocacy begins with public interest groups and NGOs that see the need for change in policy or laws within a given society. Sometimes it is these individual efforts that pay off. Very often these activities are fragmented and ad hoc. By using participatory methods and involving key government and civil society partners, national, state, or district advocacy plans for changes in policies and resource allocation can become part of an overall communication planning exercise. These individual groups may later wish to engage lobby groups or public relations firms that have experience in moving the public agenda through negotiation and persuasion or by positioning issues effectively through public events and the media. Strategic approaches to gaining political commitment for a sustained effort in the fight against HIV/AIDS will vary by country and context. In some countries, political leadership may be ready to become more committed to the fight against HIV/AIDS, but religious leaders may remain an obstacle. In this case, it may be difficult to foster change. To help “break the silence,” one solution is to locate and educate one potentially powerful “positive deviant” in the religious community who can plant the seeds of change. However, the political leadership in a country might be too conservative or too preoccupied with other issues, such that the only possibility is to start with changing public opinion—the opinion of the leadership’s key constituencies—in order to build pressure for change. Another strategic approach is to influence leadership opinion through a pilot project such as a community-based response in which the leaders not only see the problems, but also witness how a community is dealing with them in a positive and productive way. This gives the politician something to embrace and endorse publicly. Specific Strategies for Advocacy Targeted Interpersonal Communication: This strategy, also known as “lobbying,” is among the most cost-effective. Leaders are often influenced more by such interpersonal means than by any other. However, if the president of a country is a key object of advocacy, it is necessary to carefully identify the individual(s) who may influence him or her. Should it be a respected elder statesman? Or should it be a business leader, a media celebrity, or PLHA? Analysis and planning are required to determine this. In addition, advocates or lobbyists must know what they want to achieve through such interactions. “An advocate should never go into a meeting designed to increase political commitment for HIV/AIDS policies and programs without being able to respond to the question, ‘What do you want me to do?’” (The Policy Project, 2000a).

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Simple P rint T ools: Simple, well-designed print materials can be effective in reinforcing Print Tools: the main points one wants to make, including actions the leader can take. One of the most effective materials are pocket-sized, colorful, spiral-bound cue cards containing key points in bullet form with easily understood graphics. Leaders need accessible information. The object is to advocate with them so that they in turn become advocates for HIV/AIDS prevention and care. If top leaders are well-respected, they will have a great deal of influence on the public statements and actions of their subordinates who can further influence the public at large. Presentations on the Impact of AIDS: One means of getting the attention of political and social leaders is to demonstrate the effect HIV/AIDS has on the overall demographic, macroeconomic, and social development trends in the country. A politician’s own survival depends on the improvement in such trends, especially in democratic countries. When confronted with clear projections, based on good data, leaders may be persuaded to put their weight behind a cause. One example of such a tool is the AIDS Impact Model (AIM) of the Policy Project (see Cambodia case study). AIM has been used in a wide variety of countries and settings, such as in Kenya, where hundreds of presentations have been made to different levels of society, from the President to district development committees. In Kenya, AIM presentations contributed to an increase in political will to act after a long-held silence (The Policy Project, 2000b). Briefing and T raining of Members of P rint and Electronic P ress: This strategy, sometimes Training Print Press: called “media advocacy,” may be effective in broadening political and social leadership support, especially in more democratically inclined systems. Leaders know that media have a large role in shaping public opinion. Well-informed media channels—such as newspapers, radio and television news, and public opinion programs—can influence leaders by providing them with new facts and opinions, as well as conveying the perception that their constituents may also be well-informed on these same facts. For example, one of the main problems that journalists still face when reporting on HIV/AIDS is convincing their editors, who are often not sensitized on the issues of appropriate ways to handle stories. Moreover, newsrooms in many countries are often dominated by men who see HIV/AIDS as a “soft issue” (AWMC and UNDP, 2001). Journalist training can have a major effect on mass media and advocacy regarding the ethics of AIDS reporting, as well as curbing the use of vocabulary that invites stigma. Training should include editors in their role as gatekeepers for HIV/AIDS stories and HIV/AIDS NGOs, which need to learn how to collaborate better with the press (AWMC and UNDP, 2001). In training media personnel on HIV and AIDS, it is important to present technical information in a clear and concise way with well-formulated curricula, well-designed hand outs, reference papers, and sources of further information. Journalists may view very glossy, expensive-looking materials as “propaganda” and reject these outright. In addition to the complex technical issues involved with a retrovirus and its attack on the body’s immune system, journalists must deal with many social issues: values, biases, prejudices, myths, and

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misconceptions. They must have the freedom to discuss all the issues in an open, nondirective manner. In some cases, the trainers will need expert opinion and almost irrefutable evidence. However, those organizing the training of journalists must be prepared to deal with strong opinions based on political perspectives rather than science, such as the debate that raged in South Africa that poverty (not HIV) causes AIDS. Good facilitation skills are needed to keep the training or orientation session “on track” if such issues arise. Training of journalists should not be restricted to technical or medical issues. Journalists are in a position to rapidly propagate myths and traditional biases, such as the belief in some countries that women are to blame for the spread of HIV or that having sex with a virgin is a cure for AIDS. In addition to dispelling such myths, journalists need to know that one of the fundamental causes of the spread of HIV/AIDS through heterosexual behavior is gender inequity. Therefore, gender sensitization and training may be just as important or more important than teaching about the medical and health issues involved in HIV transmission. Likewise, training on issues of human sexuality may be needed to counteract prejudices against MSM and sex workers. It is important to involve gender and sexuality experts and to include the participation of both men and women in training sessions. Without such training, journalists may propagate gender stereotypes and myths about the role of women or minority groups in spreading HIV, thereby hindering rather than facilitating social change. Holding P ublic Events: Public events—including conferences, workshops, and meetings to Public discuss policy issues or research findings—have been somewhat overused in HIV/AIDS programs. If events are well-designed, they provide an occasion for political and social leaders to confirm or reaffirm their commitment to the fight against HIV and AIDS. Leaders know that people want to hear their position on issues. Strategic use of events includes the strategic choice of the right venue and audience and proper briefing of leaders on issues beforehand. For example, it would be counterproductive if the audience were to berate a leader publicly or if the press were to scorn him or her for a position taken. Such incidents can weaken political commitment to the fight against HIV and AIDS. By contrast, a newsworthy, wellinformed, and well-orchestrated press conference can serve to broaden advocacy to lower level leadership, as well as the general public. Working with PLHA for Change: Engaging PLHA as spokespeople for HIV/AIDS programs and involving them in the planning of interventions may be one of most effective strategies for “breaking the silence” and dealing with stigma, as well as increasing political will for policy change and an enabling environment. It is particularly fortuitous when such spokespersons are well-respected individuals who no one would have expected to have HIV or AIDS. When President Museveni first opened public discourse in Uganda, Philly Bongoley Lutaya, a Ugandan musician based in Sweden, declared publicly that he was HIV-positive and returned to Uganda in 1989 to speak out widely about the disease before he died (KyenkyaIsabirye, 1990). His advocacy work benefited the people of Uganda and gave the impetus for setting up the AIDS Information Centre, which now provides VCT services to a large number of people. His name is memorialized in programs even today. Magic Johnson, the famous American basketball star, is another person who helped to set the public agenda and destigmatize PLHA. He remains alive and healthy today, largely because of HAART and the steps he has taken both mentally and physically to protect his health. Using mass media

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channels to communicate messages of such popular personalities helps spread the word that HIV and AIDS can be dealt with in a positive and open manner. However, it is not necessary that spokespeople always be celebrities. Nkosi Johnson, an 11-year-old South African boy, had a great influence on public opinion by stepping up to the podium to break the silence in South Africa before he died of AIDS (Singhal and Rogers, 2003). In Ghana, the Stop AIDS, Love Life program created radio and TV spots and materials with an HIV-positive laborer named Douglas Sem, who was the first to speak out about his status in an open way. His openness led to greater political commitment and began to reduce stigma (Tweedie et al., 2002). Putting politicians and religious leaders on the same stage as PLHA can send a powerful signal to lower-level political, religious, and community leaders, as well as to the public at large. Leaders may be spurred into action through the personal experience of knowing someone who is living positively with HIV/AIDS or someone who has died.

Key Issues to Communicate In advocacy, issues or key messages to communicate may be many and varied. This will depend largely on the answers to the formative research questions mentioned above. In countries where the epidemic is not advanced, leaders may be motivated by the following messages: l l l l l l

Act before it is too late, before the virus spreads to the general population and takes its toll on our culture, society, and economic life. Recognize the costs and opportunity costs of different targeted interventions and their linkages to existing services or the need for new services. Expect a positive effect from such actions, based on socio-economic projections (see Cambodia case study) and the cost of long-term inaction. Take action that makes a difference, including influencing others. Address “risk behaviors” and not “risk groups,” avoiding the stigmatization of the population most infected. Use a balanced “ABC” approach.

In countries where the epidemic is advancing to the general population, additional issues to communicate may include the following: l l l l l

It is essential to “breaking the silence” on many social taboos and open up communication on the issues. A collaborative, multi-sectoral response is imperative; we are all in this together. Health and social services need to expand their capacities and meet the challenge. Religious leaders must motivate their congregations to action or they will soon be out of a job. Compassion for PLHA is essential and PLHA must be involved in all aspects of the national response.

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Challenges and Lessons Learned HIV and AIDS pose a tremendous challenge for the building of political commitment due to a tendency to blame various minority groups that have little political clout, such as sex workers or MSM, groups that some national or religious leaders may denounce publicly. The invisibility of the epidemic in its early stages, and the complexity of behavior and epidemiological factors involved, sometimes allow the national resolve to be sidetracked into fruitless debates such as the one on where AIDS originated. When such resistance exists, effective advocacy for political commitment may require a great deal of analysis, preparation, and planning before it is implemented. Advocacy efforts must stay current with policy shifts and progress in programs. Instead of just calling for access to ARV drug treatment for all infected, some activists have shifted the advocacy strategy to include calls for improving the infrastructure, coordination, and collaboration of existing health care services (ICASO, 2002). In fact, this shift represents a return to earlier attempts by NGOs in the mid- to late-1990s that called for the strengthening of infrastructure and essential drugs for PLHA (AIDS Consortium, 1998). Leaders’ voices are needed at many stages. “Breaking the silence” is only a first step. New political commitment may be needed for adequate STI treatment or VCT services, condom supplies, needle exchange programs, or in-school education programs. Each of these programs implies a whole set of behavioral and social issues and may ignite differences of opinion grounded in value differences. Each may require a different approach. Programs should generally avoid focusing on the negative. For instance, religious leaders as a group have often been castigated by donors, UN agencies, and NGOs as the main barrier to increasing political and societal will. However, in spite of the lack of visible support to HIV/AIDS prevention, many religious leaders have led the way in care and support responses. There is often no recognition of the fact they often feel caught between what is expected of them in their vocational roles and the reality they face in their own lives as members of a vulnerable community. It is only in the last few years that they are being courted and are now seen as part of the solution (Howson, 2003). Finally, advocacy efforts need to be monitored and evaluated. If a particular strategy is not proving successful, there is no sense in continuing in that direction. Monitoring and measuring success in advocacy may be done through simple indicators, such as the increase or decrease in positive, negative and neutral newspaper articles on HIV and AIDS over a period of time (The Policy Project, 2000c). Another tool, used at the international level in over 40 countries, to date, is the AIDS Program Effort Index (Stover et al., 2000). This composite indicator measures a range of factors, including political support, the legal and regulatory environment, human rights, policy formulation, organization, prevention and care programs, and evaluation efforts. The results from this index serve to motivate political and social leaders to action. When a given country scores low compared to others, its leaders may feel the pressure to do better by the time of the next “report card.”

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Case Study: Application of the AIDS Impact Model in Cambodia Background: In Cambodia in 1995, a survey of sex workers revealed that 38 percent were HIV-positive; by 1997, the overall adult prevalence rate had reached an estimated 3.2 percent (Singhal and Rogers, 2003). By the end of 2001, nearly 80 percent of sex workers were consistently using condoms with customers (Singhal and Rogers, 2003), and the overall prevalence rate dropped to 2.7 percent (UNAIDS, 2002a). How did this happen? An analysis of Cambodia’s efforts to fight HIV/AIDS indicates that advocacy played a key role in gaining political support. One of the advocacy interventions implemented to sustain the momentum in Cambodia involved the AIDS Impact Model (AIM) of the POLICY Project. AIM can be used to gain support for a new national plan, to push for the creation of an HIV/AIDS coordinating council, or to increase funding for prevention and care. It consists of a computerized information tool that analyzes, develops, and presents information about the current status of the epidemic and makes projections of AIDS cases and deaths, as well as the future impact on health, social, and economic well-being. AIM incorporates proven interventions that reduce HIV transmission, reduce stigma, and improve the lives of those infected or affected. The presenter can change the assumptions during the presentation (e.g., “suppose we doubled the number of pregnant women in PMTCT services”) to show the impact of such changes on the course of the epidemic. The program also shows how the implementation of various prevention strategies will impact positively on these macro-level factors. Several versions of AIM can be prepared for different audiences, depending on their technical grasp of the subject and their preferences for different types of program planning and resource mobilization. AIM can generate computer presentations, color slides, or overhead transparencies ready for use. However, the presenter needs good presentation skills to use these tools effectively as well as technical skills to manipulate the computer program. Twenty or more presenters can be trained at one time in order to rapidly deploy the program at provincial, district, and lower levels, as required. Audiences and Strategy: In Cambodia, the National AIDS Authority (NAA) was established to lead a multi-sectoral strategic response; the United Nations Country Theme Group on HIV/AIDS (chaired by UNFPA) began to assist in developing an HIV/AIDS advocacy strategy. The need arose to “translate” data already gathered on the extent of the epidemic into laymen’s terms and advance Cambodia’s national AIDS policy agenda by mobilizing commitment and resources across all levels of the public and private sector. Based on that need, UNFPA funded the Futures Group to assist Cambodian organizations to implement an advocacy initiative to increase understanding and support for the AIDS program and to accelerate resource mobilization for HIV/AIDS prevention, treatment, care, campaigns to eliminate stigma and discrimination, and community support programs at national and local levels. The development and application of the AIM presentation in Cambodia triggered a process of building collaborative political commitment and active involvement in HIV/AIDS issues. The major steps in this process were: (i) forming an interdisciplinary team to implement the activity, (ii) collecting data and research information, (iii) selecting key audiences and priority

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messages to communicate, (iv) drafting and reviewing an information booklet and presentation, (v) training presenters, (vi) developing a detailed dissemination plan, and (vii) conducting presentations for a wide range of organizations at the national and provincial levels. In addition to forging strong collaboration between NCHADS (the National Center for HIV/ AIDS, Dermatology and STDs within the Ministry of Health) and NAA, this process fostered active debate about priority policy issues and the dissemination of key messages, encouraging input from a wide range of stakeholders, many of whom had never worked together before. These stakeholders included health and non-health ministry representatives working at national, provincial, and district levels, as well as donors, NGOs, PLHA, and the private sector. As Dr. Mean Chhi Vun, Director of NCHADS, stated, “AIM as an advocacy tool helps us all work from a common page and deliver common messages while expanding the national response to AIDS.” The final booklet and presentation includes information on the current status of the epidemic; projections about its future course; estimates of socio-economic impact; proven interventions for prevention, care, support, treatment, the reduction of stigma and discrimination; and the roles of leaders at every level of society. R esults: NCHADS and NAA have used the AIM booklet and presentation to engage policymakers at the national and regional levels in policy dialogue about the response to AIDS. The AIM booklet has been disseminated to all line ministries and provinces. The advocacy effort also included a series of workshops to train presenters in “AIM in Cambodia” in order to build advocacy capacity at both the national level (among members of the NAA Technical Board) and also at the provincial level (among multi-sectoral Provincial AIDS Committee presenters). Working from a master dissemination plan, these presenters continue to deliver AIM presentations with careful preparation and technical support by NCHADS and the Futures Group. This approach has strengthened ownership of the project at all levels and throughout many different sectors, as well as the capacity to adapt and disseminate AIM to specific target audiences in order to achieve specific advocacy goals. A rudimentary monitoring and evaluation system will help to inform achievement of advocacy goals at each level. Lessons Learned: Future applications will continue to build sustainable, in-country, crosssectoral capacity for data collection, modeling, and analysis of HIV/AIDS issues and impacts; measuring and building political commitment; and increasing multi-sectoral, multi-level collaboration during national HIV/AIDS strategic planning. Dissemination of AIM messages will utilize the inherent organizational structure—from national to district—existing in each sector. Persons trained in impact analysis, presentation, and advocacy skills will be able to apply these to future work in operations research, socio-economic surveys, evaluation designs, and advocacy programs; so contributing to a multi-sectoral response to HIV/AIDS in Cambodia for years to come. Source: Stover and Begala, 2002

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Social Mobilization to Bolster the National Response Rationale Through advocacy, we garner political commitment for the fight against HIV/AIDS, and this commitment, hopefully, sparks concrete social action. Historically, the first response in many countries has been to set up control programs in ministries of health, treating the epidemic as a health matter. However, it has become apparent that HIV/AIDS affects all aspects of human life and requires a multi-sectoral response. Once more, it was Uganda that took the lead in establishing the Uganda AIDS Commission in 1992 under the Office of the President with membership from different organizations, including PLHA. The late Bishop Misaeri Kauma, Church of Uganda, first chaired the Commission and the chairmanship has remained in the hands of the church, with the Minister of Health as a co-chair. This arrangement sent a signal that action on HIV/AIDS in Uganda is a multi-sectoral responsibility. It is everybody’s business. Besides addressing individual behavior, HIV/AIDS has to be tackled at the social, environmental, and structural levels (Oussama et al., 1995; Sweat and Denison, 1995). Building a multi-sectoral response entails the involvement of all levels of government, NGOs and Community-Based Organizations (CBOs), faith-based organizations, foundations, service clubs, the private sector (including retail and manufacturing), the informal sector, and financial services. It also means collaboration between public sectors that are often vertically organized: health, nutrition, agriculture and fisheries, education, social services, law, sports, media, culture, children and youth, gender, media, communications and transportation, uniformed services, and others. This is not to say that each and every member of these categories, levels, and sectors must work together from the start. Inter-sectoral collaboration is not the norm in most countries. Networking and coalition-building takes time (for a variety of multi-sectoral country profiles, see Mani, 2002; PVO-USAID, 2002). Countries that are successful in igniting a social movement for HIV/AIDS prevention and care have a much greater chance of success in defeating the virus. The process of establishing such a movement is called “social mobilization.” This term has been defined and understood in various ways. The definition most aligned with the thinking in this section, however, is as follows: Social mobilization is a process of bringing together all feasible and practical intersectoral social partners and allies to determine felt-need and raise awareness of and demand for a particular development objective. It involves enlisting the participation of such actors, including institutions, groups, networks and communities, in identifying, raising, and managing human and material resources, thereby increasing and strengthening self-reliance and sustainability of achievements (McKee et al., 2000b). As defined above, “community mobilization” (described in greater detail in the next section) may be a part of an overall social mobilization process. However, individual communities or

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clusters of communities may also be mobilized by internal dynamics and processes, or through the help of civil society organizations, in the absence of overall societal mobilization. In fact, international community development experts and NGOs have created a plethora of projects, tools and processes to garner the participation of communities in development efforts, including HIV/AIDS prevention and care. In contrast, we have paid less attention to the processes of social mobilization at the national, regional/state, district, and local levels. This gap has been apparent in the response to HIV and AIDS in many countries.

Formative Research The process of social mobilization requires a good deal of preparation. In many ways, this research is an extension of the participation analysis and formative research required for advocacy: l

l

l

l

Who are the major players (potential partners, allies and gatekeepers) at the national, regional/provincial, municipal, district, and sub-district levels? This listing will include governmental and non-governmental individuals and organizations, including associations, social, and religious groups. It will also include an analysis of their present involvement in HIV/AIDS and their interest and potential in the issues and intervention areas. What are the capacities and capacity gaps of major players? What capacity-building interventions are needed (e.g., training on elements of strategic communication: advocacy and BCC, including interpersonal communication, community mobilization, and uses of mass media? What are the most appropriate forms of partnerships and organizational structure, methods, and processes to ensure participatory planning and sustained coordination/ collaboration? What human and monetary resources are needed by various partners to carry out effective plans?

Audiences and Actors As many partners and allies are required as is feasible and practical for a national social mobilization program. Some of those who are brought on board through advocacy become the advocators for action among a wider group spanning multiple levels. This inter-sectoral collaborative action may include government ministries concerned with the following: l l l l l

Health and nutrition Agriculture and fisheries Social services Children, youth and gender Education and sports

Communication for Change 67 l l l

Media and culture Transportation and telecommunications Local government, law, and uniformed services

It also may include all levels of government: l l l l

President’s or prime minister’s office Parliamentarians/legislators National, regional/state, provincial and district/municipal administrations Bilateral donors and UN agencies

In addition, it may involve civil society organizations such as: l l l l l l l

NGOs, community-based organizations (CBOs) Faith-based organizations Traditional government structures Professional associations and networks Media associations and networks Universities Service clubs and the private sector

Strategic Approaches It is possible to carry out strategic communication programs without attempting to create a social movement for an issue, but such efforts are less likely to be effective and sustainable. While a comprehensive, inter-sectoral approach will involve actions at many levels by a large number of partners, here we are mainly concerned with those strategies that draw on the expertise of communicators. Use Leaders as Advocates: Those political, social, and religious leaders who are targeted for advocacy and become clearly committed can now be used as advocates for the social mobilization process. This can be done through interpersonal contact with parliamentarians or business leaders, through rallies, or the mass media. For example, in Ghana, the paramount chief and other tribal chiefs agreed to participate in a campaign on prevention that was broadcast nationwide on radio and television (see Ghana case study). Because political, traditional, and social leaders hold an important place in society, they have the power to motivate others and their voices will be heard. However, before they speak, they need to be well-briefed on key issues. HIV and AIDS are very complex subjects and often judgments people make about the epidemic can be strongly value-laden, thereby alienating possible partners as well as the primary and secondary audiences. Development of National Coordination Body for Communication: The national or state AIDS commission or control program normally develops coordination mechanisms for the various actions to be taken, at least at their levels. This group may work with the UN Theme

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Group or Expanded Theme Group. UNAIDS normally facilitates such bodies and national governments, major donors, and civil society constitute the membership. It is essential to have a sub-committee or other group within this framework that coordinates communication inputs for the national response and whose members have good knowledge of and leadership on HIV/AIDS. The group also needs to coordinate messages through mass media and other channels, such as schools and health services. The alternative is chaos, or at the very least, a waste of resources and potential clash of messages, thereby adding confusion. Development of a National L ogo: This strategy, also known as “branding,” involves the Logo: development of a symbol with which all players can identify. It could be an overall symbol for all actions taken in the fight against HIV/AIDS. Or it could be a few different symbols for various purposes, such as primary prevention, care and support, or youth-focused programs. However, it is important to avoid cluttering the environment, including the mass media, with too many logos. Also, programs must develop this type of symbol through a participatory process, both with partners who are expected to use it and through focus group discussions with intended audiences. The symbol must make sense to them, as well as be self-explanatory and motivating. Involving a steering committee of partners in the logo development process will avoid rejection by key players, but all members need to recognize the importance of formative research in developing the logo. Participatory Planning W orkshops: An essential ingredient of social mobilization is Workshops: participatory planning events. Too often the concept of “participation” is left to the community level for which we design processes and tools to foster increased community participation in programs. Whereas community participation is seen as desirable, very often the organizational structures inside governments and NGOs that work with communities remain nonparticipatory, rigid, and non-collaborative. Each organization may want communities to participate in its own vision and program; a situation that can result in undesirable competition, a waste of resources, and confusion. Participatory methods have proven effective in developing national, provincial/regional, and district-level plans (McKee, 1992; McKee et al., 2000c; Ng’weshemi et al., 1997), because they have the power to bring the ideas of many key players together in a creative manner. Such techniques can include mapping the present programs of all organizations and demonstrating how they fit into the national response. It is also necessary to identify gaps, research needs, new strategies, resource needs, and coordination mechanisms. Such planning exercises not only eliminate redundancy, but they can also strengthen the overall program by providing linkages between organizations and individuals that would not otherwise exist. In addition, an effective participatory planning experience may increase the motivation of the actors involved. The launch of social mobilization activities can catalyze individuals and organizations to action. Such events, often involving high-level leadership and media coverage, provide an ideal opportunity for all partners to make public their commitment to action on HIV/AIDS. Implementation occurs in phases, including “pulses” for renewing energy as new interventions such as VCT and PMTCT are launched. Use of a Common Communication and T raining T ool: Experience indicates that the Training Tool: development and use of the same communication and training tools by a large number of

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partners can be highly effective in social mobilization. Such items may include videotapes, facilitation manuals involving games and exercises, and other participatory processes to facilitate behavior change and behavior development (such as Journey of Hope, described later in the chapter). Very often, organizations want to develop their own tools “from scratch.” Doing so not only wastes resources, but it may also destroy collaboration and create confusion. The development of common tools requires key partners to be involved in the needs assessment and formative research that reveals the perceptions of potential users, as well as operations research on how the tools are actually used by various clients and user groups. Program planners should guard against having too many tools, especially tools developed in a vacuum without the involvement of possible end-users. If a group wants to adapt tools that already exist, the process can be collaborative as well. Capacity-Building: Training communication partners on strategic communication is an essential strategy for reinforcing social mobilization. Communication planning is required down to the district and community level, and the key actors will need skills in directing research, formulating plans, developing and pretesting materials, implementing interventions, and monitoring and evaluation. In addition, key partners need training on participatory planning and training methods so that the levels of participation will not decrease from the national level to the community. Finally, those trained need to be supported through networking, information updates, web-based and electronic linkages, if possible, and through technical assistance when needed.

Key Issues to Communicate Social mobilization is a set of processes that usually follow from advocacy and strengthen BCC. As such, it is not possible to separate out key issues to be communicated. However, those who advocate for such processes would emphasize the need for collaboration, participatory planning processes, an overall intervention plan, and capacity building to carry it out at all levels. One important issue to communicate and address is the need to map out the interventions, roles, and responsibilities of different organizations, both government and civil society, so they reinforce and complement each other so as to avoid overlap that can lead to a waste of resources, chaos, and confusion. Box 3-1: HIV/AIDS Communication Planning in Maharashtra, India In Maharashtra, where the HIV incidence is rapidly rising and coordinated action has been absent, representatives of all key state agencies, NGOs, researchers, and media organizations participated in a one-week planning workshop in late 2002 to develop an integrated statewide communication plan for prevention, care and support, and reduction of stigma. The participatory planning process involved the use of Visualization in Participatory Programs (VIPP), a planning and training methodology that has had considerable success as a social mobilization tool for various social programs in a number of developing countries (McKee et al., 2000c) (See Plate 3-1). Source: See citations mentioned in the box.

70 Strategic Communication in the HIV/AIDS Epidemic

Plate 3-1: NGOs, researchers, and media organizations developed a communication plan to deal with HIV/ AIDS during a week-long communication planning workshop in Maharashtra, India. (Credit: CCP) Source: Health Communication Partnership, 2003c

Challenges and Lessons Learned Weak P olitical Support: Social mobilization has the greatest chance for success when the Political head of state, president, prime minister, or chief minister is actively engaged. If such leaders are not favorably disposed, it may be necessary to find a strong substitute such as the first lady or a retired statesman, or stateswoman. Weak or nonexistent leadership in the fight against HIV/AIDS is a serious but not insurmountable challenge to social mobilization. However, under such conditions, it becomes more difficult to galvanize partners into action, secure the necessary funds, get commitment from donors, and devolve the program to lower levels.

Communication for Change 71

Sustaining Commitment: Once people and organizations become active, it may be difficult to sustain a high level of commitment and coordination. Many different national and donor interests come into play, as well as differing perspectives on crucial issues such as culture and human rights. Coordinators require excellent facilitation skills to keep all partners involved. Sometimes people are chosen for coordination roles based on their reputation in a technical area, and they may lack the ability to facilitate group processes or motivate a coalition to grow while remaining faithful to program objectives. Ensuring F ull P articipation by all P artners: In planning processes involving different Full Participation Partners: organizations, the positions and programs of a few partners often dominate. Those in charge should actively work to avoid this kind of “seminar culture.” Participatory planning requires true participatory processes run by professional facilitators who can balance the inputs and experience of many organizations and individuals in a neutral way, and allow the group to answer a set of questions in a progressive manner. This approach is crucial to securing a widely held sense of ownership in plans. Very often people in authority (or people who think they should be in authority) are impatient with such activities and will attempt to disrupt or “hijack” the process. Experienced facilitators can deal with such behavior if the leadership agrees upon their role in advance. An even greater challenge is that encouraging participation will tend to open up many vocal debates. For instance, debates may erupt on the question of the balance between prevention and care and treatment, including the provision of drugs as a human right for PLHA. The best solution is to have a national plan of action with policies that anticipate and address such issues. Without such planned coordination, conflict, chaos, and a waste of resources may ensue. Ensuring Community P articipation: Over-planning at the national to district levels may Participation: inhibit community incentive. The success of Uganda’s efforts was largely due to the philosophy of “letting many flowers grow”—that is, letting local actions flourish. With the devolution of power and responsibility, people can be motivated to act. At the same time, it is useful for those at the central level to map ongoing programs or interventions throughout the country to avoid duplication, conflicts between organizations, and wasting resources. Dealing with “Burnout”: The epidemic affects many of the key players in the national response on a personal basis daily. They may be HIV-positive themselves, fear that they are, or they may have family members or close friends who are sick or have died. Some may have the extra social and economic responsibility for guardianship of orphans. These realities may affect their energy levels and the timeliness of their inputs. However, the visible involvement of PLHA in all aspects of the program may be a motivational factor for all those affected. Monitoring R esults: Most monitoring and evaluation efforts involve interventions that Results: focus on the individual as the unit of measurement. Very little monitoring or evaluation research exists on social mobilization processes, including measurement of effects on the environmental and social structural changes required for positive and sustained behavior

72 Strategic Communication in the HIV/AIDS Epidemic

change (Kelly and Parker, 2001). For instance, some of the process indicators for social mobilization include the existence of plans and the degree to which they are followed, the number of organized and complementary partners involved, evaluation of their specific programs, and the degree to which roles and responsibilities are clearly understood by the various actors in the process. Evaluators face an important challenge in measuring environmental or structural factors, as well as the effect of social mobilization on these factors. Beyond Social Mobilization: Finally, advocacy and social mobilization are necessary but not sufficient components for achieving social and individual change. A strong program of BCC, including behavioral development for children and adolescents, is required for meeting program objectives. One definition for BCC has been given as follows: Behavior Change Communication is a research-based, consultative process of addressing knowledge, attitudes, and practices through identifying, analyzing, and segmenting audiences and participants in programs and by providing them with relevant information and motivation through well-defined strategies, using an appropriate mix of interpersonal, group and mass-media channels, including participatory methods. (Adapted from McKee et al., 2000b) Figure 3-1 conceptualizes the relationship between these various components of strategic communication. All of these components of strategic communication should be strongly linked to services. The planning continuum arrow on the three principal components of strategic communication indicates that there is no automatic starting point. Rather, it depends on the issue. Leadership may be ready for advocacy on one issue in HIV/AIDS programs but not another. Sometimes it may be more fruitful to forego direct advocacy for the time being and concentrate on building a network for a process of social mobilization, selecting a set of partners who can put pressure on leadership. Alternatively, in the absence of political support, communication programmers may start by building demand in the population through broadscale BCC and thereby foster a gradual change in the perception of leadership on the issues, if they are allowed to do so. This book focuses largely on this outer circle of BCC through the strategic approaches of mass media, interpersonal communication, and community mobilization. However, the concepts of advocacy and social mobilization will re-emerge in various examples, for without these broad-based complementary strategies, strategic communication will often be incomplete or unsuccessful.

Communication for Change 73 Figure 3-1: Strategic Communication Components

Source: McKee et al., 2000b

Case Study: Stop AIDS, Love Life in Ghana The Stop AIDS, Love Life program illustrates how the concepts of Advocacy, Social Mobilization and BCC fit together. Background/R ationale: During the last quarter of 1999, a confluence of events in Ghana Background/Rationale: galvanized the national response to HIV/AIDS at a level not previously achieved in the country. The National AIDS Control Programme and its partners had labored diligently for many years in the areas of policy development, situation and response analyses, and development of a national strategic framework, thus laying a strong foundation for action. This foundation was necessary, but not sufficient, in catalyzing a national response. All too often, excellent policies and elegant strategies never get implemented. But in this case, a series of events that occurred in a three-month period triggered action. Since then, Ghana’s national response has steadily grown stronger.

74 Strategic Communication in the HIV/AIDS Epidemic

Plate 3-2: Stop AIDS, L ove Life road shows attracted large crowds and raised HIV/AIDS awareness in Ghana. (Credit: CCP)

Audience and Strategy: The key audience for advocacy was the President and the Cabinet. A combination of advocacy interventions at these most senior levels and the introduction of a major BCC program provided the catalyst to strengthen the national response. A variety of organizations, coordinated by the National AIDS Control Programme, contributed in varying capacities, drawing on their relative strengths and expertise. Process: In October 1999, a high-level delegation of the International Partnership Against AIDS in Africa, organized by UNAIDS and led by Dr. Miriam Were of UNFPA, went to Ghana on an advocacy mission. As part of a full schedule of activities and meetings, Dr. Were talked with the Minister for Communications for hours. This personal lobbying activity convinced the Minister that he and his ministry needed to be actively engaged in the national response against HIV/AIDS. Shortly thereafter, the Ghana Social Marketing Foundation and Johns Hopkins’ Center for Communication Programs briefed the Minister on the forthcoming Stop AIDS, Love Life program, funded by USAID, to elicit his support and patronage. The Minister was instrumental in garnering the support of the President and First Lady, raising the profile of the initiative to the national level. The First Lady subsequently launched Stop AIDS, Love Life in February 2000. The Minister for Communications also mobilized the resources of his Ministry in support of the program, including 20 mobile cinema vans that toured the nation, reaching millions of people with messages on HIV/AIDS.

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Because the program started at the top, it was easier to obtain the highest levels of support and participation in subsequent phases, injecting “pulses” of activities to renew the energy and motivation needed to adapt the key messages. This high-level participation and support came from government officials, traditional leaders, and religious leaders. The King of the Ashanti, who is the President of the National House of Chiefs, and other paramount chiefs participated in a phase of the campaign that featured them speaking frankly about HIV/ AIDS issues. This most traditional and senior-level support, which was broadcast frequently on television and radio, was instrumental in mobilizing other chiefs and “queen mothers” to take up the issue in their own communities.

Plate 3-3: A traditional leader in Ghana takes part in the W orld AIDS Day procession in support of the World Stop AIDS, L ove Life program, F ebruary 2001. February (Credit: CCP)

The Vice President launched the next phase of the campaign, dubbed Journey of Hope. The Journey of Hope (Box 3-4) is a participatory, life skills toolkit designed to enhance community responses to HIV and AIDS. Many organizations throughout the nation incorporated the Journey of Hope into their own programs, using their own resources to support it. Many of the most senior religious leaders in the nation, among both Christian and Muslim faiths, committed themselves and their institutions to the third phase of the campaign, which focuses on compassion and destigmatizing PLHA. These religious leaders appear frequently on radio and TV spots, stimulating their congregations to follow their lead.

76 Strategic Communication in the HIV/AIDS Epidemic

Lessons Learned: The involvement of various agencies was critical to the success of this approach. Compelling advocacy activities created the initial will and energy for social mobilization from ministry to community levels. Subsequently, the BCC program provided the way to direct this commitment towards specific behavior. It is doubtful if one component in the absence of the other would have resulted in the strengthening of the national response as it has occurred in Ghana in recent years. Sources: Tweedie et al., 1997; 1998; and 2002

Interventions to Strengthen Community Responses People are resisting changes and innovations in their lives for a variety of reasons. They typically resist changes not clearly understood; changes they or their representatives had no part in bringing about; changes that threaten their vested interest and security; changes advocated by those they do not like or trust; and changes that do not fit into the cultural values of the community. (Nix, 1977 as cited in Bracht and Kingsbury, 1990)

Rationale In high prevalence countries, communities are currently taking the brunt of the epidemic. Sustained denial, stigma, and discrimination against PLHA prevent communities from normalizing the disease and integrating it into shared problem-solving strategies (Busza, 2001). Meanwhile, the burden of caring for terminally ill adults and children is taking an unprecedented toll on families, eroding community coping capacities and traditional social safety nets. BCC strategies often aim at the individual and operate at the national level. However, addressing prevention, reducing stigma, and mitigating the effects of HIV and AIDS at local levels requires community-based approaches. “Community mobilization,” the most common term for such approaches, can be defined as follows: Community mobilization is a capacity-building process through which community individuals, groups, or organizations plan, carry out, and evaluate activities on a participatory and sustained basis to improve their health and other needs, either on their own initiative or stimulated by others (Howard-Grabman and Snetro, 2003). Some guiding principles of community mobilization processes are engaging people in problem-solving activities which are relevant to their immediate needs and realities; tapping

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local knowledge information and expertise, thereby building people’s confidence in themselves; and helping to create local ownership for the process and its outcomes. In Uganda, falling HIV prevalence rates have been attributed in large part to a multitude of local responses. There has been a good deal of discussion recently, about replicating the Uganda experience elsewhere, and this has led to high expectations for such approaches. Critics respond that very often anecdotal evidence is all that is available to verify the value of such approaches; few community-based responses have been sufficiently documented or evaluated to determine their true impact (ICASA HDN Key Correspondent Team, 2001). Some say Uganda may be a special case since it was emerging out of years of civil war at the time when HIV/AIDS hit the country, making nation building and fighting AIDS inter related. In other countries, one might argue, rather than stimulating a multitude of local responses, there may be a need to “scale up” such responses and pilot projects if one expects to truly be effective in the fight against HIV and AIDS (De Jong, 2001). Despite these challenges, community mobilization methods have become a crucial component of communication programming in the response to HIV/AIDS, largely because of a renewed recognition of the close interaction between individual sexual behaviors and community norms (Airhihenbuwa and Obregon, 2000; Piotrow et al., 1997). Social and cultural norms, to an unknown extent, mediate individual sexual behaviors. Successful communication models and strategies recognize and incorporate contextual or environmental factors involved in HIV/AIDS, sexual and reproductive health, and sexuality. Strategic communication should be designed to trigger community dialogue, which in turn can develop into collective action (Figueroa et al., 2002). At the community level, communication interventions need to be innovative and collaborative in order to galvanize community efforts and bring them to scale.

Formative Research Some key questions for formative research are as follows: l l l l l l l l

What community norms prevail concerning HIV/AIDS, STIs, and adolescent and adult sexuality among community members? What community channels exist and can be tapped for a communication intervention? What communication channel access, preferences, and habits do community members have? What social networks exist and how do they work? Who are the official and unofficial opinion leaders? What are the previous experiences with community mobilization projects? What are the health and social service structures, needs, and priorities in the community? What collaboration has there been between HIV/AIDS programs and health service structures at the local and district levels, and what is the potential for further collaboration?

78 Strategic Communication in the HIV/AIDS Epidemic l l

What needs exist regarding care for orphans and other vulnerable children? What indigenous care service systems exist in the community and how can they be strengthened?

Audiences and Actors The concept of “community” as both the audience and actor in community mobilization processes can be defined in various ways: l

l l

Geographical Community: A group of people living in or coming from a defined geographical area, sharing basic values, and organizational structures (Robertson and Minkler, 1994). Common Interest Community: Groups of people linked in a network by common values and interests, such as women’s groups, youth groups, and faith-based groups. Common Identity Community: Groups of people reinforced through their means of livelihood or common practices such as business leaders, truckers, sex workers, MSM, or IDUs.

Communities are rarely homogenous groups of people but rather are composed of various subgroups holding different interests, beliefs, and practices. They are not necessarily harmonious entities that can be easily facilitated to undertake collective action. Very often they contain elements and factions that are in conflict with one another over control of resources and socio-political processes for various historical or present reasons.

Strategic Approaches The approaches taken in community-based responses to HIV and AIDS can differ in the degree to which communities have control over the design of programing and implementation of activities (Cleland, 1996). On the Ladder of Empowerment (See Box 3-2), the degree of participation can range from Information to Community Control. Whereas the first categories of information and consultation or “community outreach” are considered important first steps that involve the community to a limited degree, the latter two processes are clearly identified with true community mobilization and participation methods. Available program resources and duration of the project often determine which approach is realistic and possible. However, most development specialists concur that the higher the degree of community participation and ownership, the greater the program’s effectiveness and sustainability. In recent years, many community-based projects in high-prevalence countries have undergone a change in focus. NGOs and CBOs have shifted from their initial focus on prevention

Communication for Change 79 Box 3-2: L adder of Empowerment Ladder Low

Information Consultation

Medium

Delegation

Partnership

High

Community Control

Information about existing program decisions is given and explained, but no channels for feedback are provided. Views are sought before decision-making; community members are asked to advise on or revise a preset program through focus groups, attitude surveys, neighborhood meetings or pretesting, but program planners judge the legitimacy or feasibility of the advice. Local leaders have the opportunity to influence decision-making by a local committee that has a mandate to represent the community (e.g., review board) and guarantee the accountability of the program. Shared authority on planning, decision-making, and implementation of responsibilities (e.g., through joint planning and implementation committees, as equal stakeholders). Authority of the community to develop, manage, and implement programs of their choice—perhaps within a framework of grants, advice, and support provided by the resource holder.

Source: Adapted from Wilcox, 1994

to a combination of prevention and care activities (International HIV/AIDS Alliance, 1998; Kippax and Race, 2003). This change has increased these organizations’ need for technical support, capacity-building, and strategic partnerships to effectively facilitate community processes such as the one outlined in Box 3-3. As is evident from Box 3-3, programing for prevention, care, and support at the community level must go beyond “surface” activities such as information dissemination and condom distribution to exploit the full potential of communities. A comprehensive approach to community actions against HIV and AIDS should be employed and should ideally combine the following strategies (adapted from International HIV/AIDS Alliance, 1999): Advocacy for Community-Based P rojects: Advocacy to garner support for communityProjects: based HIV/AIDS interventions involves community action to influence local and national level policies, laws, resource allocation, and management systems through a variety of methods. This can include lobbying, supporting sympathetic candidates, rallying, and demonstrating. In Ghana and Guinea, for example, a series of meetings between small NGOs, community groups, traditional leaders, and healers helped to mobilize leaders to support and speak out on HIV/AIDS prevention strategies. Print materials as the “take-home” medium can be used by participants to reinforce key actions to be taken following the events (Bakadi, 2002; Tweedie et al., 2002). Participatory Assessments: Participatory assessments of community needs, assets, and aspirations are the foundation of appropriate and effective community-based programing.

80 Strategic Communication in the HIV/AIDS Epidemic Box 3-3: Community Action Cycle Save the Children (USA), an organization that has done extensive community mobilization for HIV/AIDS and other health areas recommends the following steps or “Action Cycle”: l l l l l l l

Prepare to mobilize. Organize the community for action. Explore the health issues and set priorities. Plan together. Act together. Evaluate together. Prepare to scale-up.

Source: Howard-Grabman and Snetro, 2003 Figure 3-2: Community Action Cycle

Participatory Rapid Appraisal (PRA), Participatory Learning in Action (PLA), and related methodologies employ techniques such as community mapping, body mapping, Venn diagrams, ranking, and scoring. These techniques are used to assist with situation analyses and to tap community expertise, formulate priorities, and motivate collective action. The community is fully involved in data collection, analysis, and documentation of the effects of health and development problems in their lives, and this activity plays a special role in the mobilization process. Participatory assessments may lead to the development of unexpected community priorities. Interventions may have to include such priorities, integrating them with HIV/AIDS prevention and care activities where they best fit. For instance, an assessment in Burkina Faso showed that low literacy and poverty are urgent problems that influenced vulnerability to HIV. Literacy training and micro-credit projects were developed in response, integrating

Communication for Change 81

discussion groups on sexual and reproductive health, including HIV/AIDS, into such activities (International HIV/AIDS Alliance, 1998). However, if the program cannot respond to community-defined priorities in this way because of donor-set conditions, it is important to be open and transparent with the community about the possibilities at the beginning of the programing process. ools for Action: NGOs and CBOs need proven but simple Communication Channels and T Tools and flexible methods and tools for action. Their focus should be on increasing the dialogue about HIV/AIDS in the community, linking people to health and community services and encouraging such services to become proactive. A good example of a tool for triggering dialogue and action is the Fleet of Hope in Tanzania (FHI, 1997), which Johns Hopkins’ CCP recently adapted for use in Ghana under the name Journey of Hope (Box 3-4). Ideally, program planners will be able to use ready-made materials, but they will need to arrive at that decision based on participatory assessments. Moreover, they often need to adapt such materials to a specific context. Other Community-Level Media and Activities There are many tools available for community-level processes (Box 3-5). In addition, a number of communication activities and channels may be useful, depending on past experience and budget allocation for such interventions: l

l l

l

Interpersonal Communication (IPC) and Group Communication: These are, of course, the most widely used and easiest channels to organize. However, the quality of IPC and group communication processes depends on good training in IPC and group facilitation methods. Too often it is assumed that anyone can be a communicator, but the community may resist poorly trained, unskilled mobilizers. Peer Education: This is a commonly used approach that is documented in detail in Chapter 6. A specific example is also given in the Guinea case study that follows. Community-Based Entertainment–Education (E–E) (E–E): E–E strategies work well at the community level through channels such as theater, sports, and music events. However, such strategies also require special training of community-level agents in HIV/AIDS issues to avoid giving incomplete or contradictory messages, reinforcing gender stereotypes, or stigmatizing certain groups. E–E methods are most effective when coordinated with other community-based program components. Community R adio: Local mass media, such as community radio stations, may be Radio: effective but they rarely have the personnel and technical capacity to continuously develop informed HIV/AIDS programing without a good deal of assistance. Preproduced documentaries, drama, and regular newsletters on HIV/AIDS issues may provide valuable content. Program presenters and disk jockeys are in dire need of HIV education and guidelines for ethical reporting on HIV and AIDS in order to avoid transmitting misinformation and inadvertently increasing stigma. There is a need, for instance, for ethical guidelines for including PLHA volunteers and spokespeople in radio and other community-based communication programs.

82 Strategic Communication in the HIV/AIDS Epidemic Box 3-4: The Journey of Hope One of the models for action developed in Ghana as part of the Stop AIDS, Love Life campaign is the Journey of Hope (JOH). JOH is a practical and participatory life skills tool that engages communities and individuals in meaningful interaction on HIV and AIDS in ways that are culturally acceptable. JOH helps to establish the link between an individual’s goals in life (represented as “future islands”) and current HIV prevention behaviors. It allows all to participate in an entertaining activity that not only delivers a clear message, but also builds supportive social networks in communities. Moreover, it provides a framework within which to discuss issues of sexuality and HIV/ AIDS in non-judgmental ways. Participants in the JOH try to walk across sticks of wood on the ground, each representing a different prevention strategy (ABC—Abstinence, Be faithful, or use Condoms); if they fail to stay the course, they risk falling into the surrounding water full of crocodiles (HIV). This exercise reinforces the point that it is tricky but possible to remain safe from HIV/AIDS, while moving towards “future islands.” JOH has gained acceptance and use by a wide spectrum of groups in Ghana, including religious groups, schools, NGOs, government employees, youth groups, and others. The local team initially produced over 2,000 kits and trained numerous NGOs and community groups in their use. Subsequently these groups have incorporated JOH into their peer motivation activities throughout Ghana. Based on qualitative assessments, JOH shows promise as an effective tool for behavioral change. The demand for JOH kits continues to increase. Source: Tweedie et al., 2002

Plate 3-4: The Journey of Hope toolkit in Ghana illustrates how behavior affects the spread of HIV/AIDS. (Credit: CCP)

Communication for Change 83 l

L ocal Materials: Evidence suggests that creative, well-designed local materials in local languages can influence attitudes and behaviors of community members. Support materials, such as caps and bags carrying a locally designed logo, are usually popular incentives for local action. One participatory way of developing appropriate health promotion materials and activities at the local level is known as “Action Media” (Parker, 1997). This workshop-based methodology combines educational and reflective elements with games, role-plays, condom distribution and media development.

Box 3-5: Additional Community-Based T ools Tools l

l

l l

For participatory development of programs: Berengere De Negri et al., 1998. Empowering Communities: Participatory Techniques for Community-Based Program Development. Vol. 1 (2), Trainer’s Manual (Participant’s Handbook). Nairobi: CAFS in collaboration with JHU/CCP and AED. For situation assessments, partnership-building, guiding participatory workshops, and other capacity-building tools: HIV/AIDS NGO/CBO Support Toolkit: A CD-ROM and website at http://www.aidsalliance.org/ngosupport/. For community media in Southern Africa: Health-e, Soul City: HIV/AIDS. A Resource for Journalists. Brochure accessible at www.health-e.org.za. For community mobilization: Howard-Grabman, L.H. and Gail Snetro, 2003: How to Mobilize Communities for Health and Social Change. Health Communication Partnership.

Source: See citations mentioned in the box.

Other R elated P rogram Strategies Related Program NGO/CB O Capacity Strengthening: NGOs and CBOs need a diverse range of skills and NGO/CBO resources to respond effectively to HIV/AIDS. Since their planning and implementation capacity is often limited, successful community health communication approaches must build NGO and CBO capacities in both organizational and technical areas. Organizational capacity includes developing realistic strategies, detailed action plans, and budgets, as well as finding the most effective partners for implementation. There is a need for strengthening technical capacities to plan and design communication strategies that are tailored for the circumstances of a particular community or communities. NGOs and CBOs can also benefit enormously from technical support that helps them incorporate education and communication on sexual and reproductive health, sex and sexuality, gender, and HIV/AIDS stigma into all aspects of their own organizational policies and programs (International HIV/AIDS Alliance, 1998). Clear guidelines are needed on how to involve people infected and affected by HIV and AIDS at all stages, to approach gender inequalities as a source of vulnerability to HIV infection, and to monitor and document programs. Building Strategic and Multi-Sectoral P artnerships: Partnership-building through particiPartnerships: patory planning by community groups (e.g., churches, private sector, schools) and external organizations (government agencies or donors) fosters collective action, maximizes use of resources, and builds consensus around strategic communication goals.

84 Strategic Communication in the HIV/AIDS Epidemic

In some countries, “local response networks” have been formed. These carry out the function of identifying and training community facilitators at different levels and developing coalitions among governments and NGOs or CBOs. Governments and NGOs provide resources for community groups and assist in developing action plans, including communication programs or campaign designs, through participatory, multi-sectoral workshops (UNAIDS, 2002a). In some countries, partnerships exist between local AIDS Action Committees and district health administrations that manage networks of health services. Such partnerships can greatly facilitate health care access, resource allocation, and coordination of community communication activities (Ng’weshemi et al., 1997). Multi-sectoral collaboration (e.g., education, community development, and planning) is crucial from the start to help build a sustainable program structure. However, in many countries such networks and structures do not yet exist.

Key Issues to Communicate l l l l

l l l l

Disseminate correct information, especially at the community level, about HIV/AIDS, its prevention, care, and consequences (such as OVC). Correct misinformation about transmission and concepts that stigmatize. Emphasize compassion and solidarity. Involve interested traditional and faith-based leaders to develop appropriate ways to address stigma and prevention (abstinence/delay, reduction of partners/faithfulness, and condom use). Address gender norms and harmful traditional practices. Determine the feasibility of messages focusing on sexual violence and intergenerational and transactional sex. Promote home-based care methods and successful community-based strategies for OVC. Promote VCT, STI treatment, and the treatment of opportunistic infections and develop ways to support adherence to ART, if available.

Challenges and Lessons Learned Limited Community Capacity: It is not enough to help communities assess their needs and draw up action plans. Organizational capacity-strengthening and sustained assistance in the implementation phase are crucial. Donors may overestimate community capacity. Implementers need to recognize the technical and strategic limitations that may exist at the community level and design programs accordingly—or invest a good deal more in capacitybuilding. It is difficult to find good community mobilizers and facilitators. Selection criteria are often lacking or not properly applied, and potential candidates often need considerable training in participatory processes and skills building.

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Community Demand: Communities should be selected on the basis of local demand for interventions if projects are to be effective and sustainable. Designing a “demand-driven” distribution system (e.g., for communication materials) can maximize the likelihood that materials will be used. Scaling Up: Scaling up the reach of community-based programs is a tremendous need and challenge to programmers, given the rapid spread of the epidemic. Critics have argued that small pilot programs with no chance of replication are unproductive (De Jong, 2001). Others have argued that program planners should replicate processes that help communities identify appropriate, local solutions. At the same time, communities may benefit from sharing their experiences with others (Howard-Grabman and Snetro, 2003). Programmers need to make sure that they only promote and scale up “best practices” that have been demonstrated as effective through careful evaluation. Otherwise, we may perpetuate a cycle of trial and error. Mass Media as a Complement: Using mass media for the wider dissemination of local solutions is an effective way of sharing lessons learned, acknowledging a successful community solution, and affecting social norms at the same time. Mass media can disseminate successful community efforts to other communities. Successful, local processes and lessons can even be incorporated into national strategy planning by governments, NGOs, and the private sector. Harmful Community Norms: Responses to the epidemic must address not only community problems, but also norms and values that shape relationships between people, such as gender relations and traditions manifested in early marriage, polygamy, or treatment of widows, creating vulnerability to HIV.

Case Study: Mobilizing Traditional Networks in Guinea Background: Guinea’s national HIV seroprevalence is 2.8 percent (USAID, 2001). However, in urban areas rates are as high as 42 percent among FSWs and between 5 percent to 7 percent among other vulnerable population groups such as miners, truckers, and the military. Guinea is nearing a transition stage where the epidemic could easily make its way into the general population. Even though rural areas appear to have much lower rates, this could change if concerted action is not taken. The situation has been exacerbated by unstable political circumstances in neighboring countries. Refugees from Liberia, Sierra Leone, and Cote d’Ivoire move in and out of Guinea and there are numerous military camps in the region (USAID, 2001). As in other areas of conflict in Africa, these conditions have the potential to increase the HIV prevalence rate exponentially. However, Guinea, especially in rural areas, remains a very traditional Muslim society where sexuality cannot be discussed in public and sex education was totally absent until

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recently. In 2000, the Prism Project was launched in Siguiri district to protect young Guineans against HIV/AIDS. An assessment revealed a high number of traditional social networks that have an effect on sexual health. Seres are peer groups of female friends based on age cohorts (e.g., 15 to 19 years, 20 to 24 years, 25 to 30 years, and so forth). Membership in Seres starts at age six and lasts a lifetime. Seres are relatively formal, holding weekly or monthly meetings with an agenda. Seres provide tangible help to members during weddings, childbirths, and deaths; they undertake community activities. The more than 70 registered Seres meet regularly to respond to members’ needs and to undertake community activities. In the District Development Committee, which includes a health committee, traditional and public leaders meet and share political influence. The committee is composed of educated, community stakeholders, such as political leaders, doctors, lawyers, pharmacists, teachers, and two or three representatives from Seres. Audience and Approach: The PRISM Project combined an adolescent HIV/AIDS prevention campaign using peer leaders with a community mobilization approach. Working in partnership with the traditional social structures and networks, the project defined community leaders and parents as secondary audiences who influence the youth in their decision-making. In January 2001, project personnel met with the District Development Committee to share available data regarding the prevalence of HIV in the district capital. This, and many more follow-up visits were part of an advocacy process to prompt community action. The committee soon decided to dedicate the year 2001 to HIV. With one Seres taking the lead, all traditional and appointed leaders as well as local NGO representatives discussed the effects of HIV/AIDS on the district and the need for appropriate action. Videos and theater were shown to the public during a traditional holiday to raise people’s awareness about HIV and increase their likelihood of adopting prevention behaviors. In order to directly reach urban and rural youth of varying literacy levels, the project used local peer educators. The peer educators were trained to do outreach work and to talk to clients coming to their businesses. “Standing Youth” were identified by the community and worked in association with the health center. They reached peers by being invited to give talks to Seres. “Sitting Youth” were young hairdressers and tailors who were trained to reach their peers by displaying and distributing educational material and to stimulate discussion around HIV and AIDS issues in their workplaces by doing condom demonstrations and referring clients to the local health center (Bakadi, 2002). In 2002, a quasi-experimental study was conducted, using a post-test only design with a treatment and comparison area to evaluate impact of the project’s activities among a representative sample of youth (500 males and 500 females 16–24 years-of-age in the treatment area, 100 in the comparison area). Fonseca-Becker et al. (2003) reported the following results: l

All Sere leaders requested and received an orientation on STD/HIV and prevention skills and behaviors. All participants committed themselves to share what they learned with their Sere colleagues.

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Evaluation results show significantly higher exposure to campaign activities for males (83 percent) than for females (63 percent). Data further indicate that in the intervention area, about 30 percent of young men and 21 percent of young women make use of peer educators (hairdressers and tailors) when they want to discuss sexuality issues. The campaign was well-balanced with the promotion of two key behaviors including abstinence and condom use. Abstinence was positioned as the first choice and approximately half of the youth (exposed to the campaign) in the intervention group reported they had decided to abstain from sexual activity. The demand created by promotional events led to the sale of 20,000 condoms. Research showed that respondents in the intervention area were significantly more likely to know where to get condoms than in the control area (86 percent and 57 percent respectively), and among those sexually active, nearly 50 percent of the male respondents in the intervention area reported using a condom at their last sexual encounter, as compared to only 24 percent in the control area. The majority of young men in the intervention area perceived their community members (including religious and community leaders, health workers, parents, and members of Sere) to be more open to discuss youth sexuality issues than before the intervention. Young women also reported significantly more openness in their community for discussing youth sexuality issues in the intervention area as compared to the control area. Anecdotal evidence also indicates that parents prefer their children to go to the peer educators because they know their children will get important information which they themselves often feel uncomfortable discussing.

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Meaningful, locally collected data can prompt action. People will act only when they feel that HIV/AIDS is a concern to them and their community. Dialogue is the key. Meeting and talking to people in the community helps to assess how they perceive the HIV/AIDS epidemic and their readiness to take action. This process allows the identification of other resource people who extend the network of actors. Using groups such as the Seres involved tapping into a very powerful, local network for message dissemination. Reinforcing people’s skills is very important. Creating a coalition is only the first step. This needs to be followed by providing technical and psychosocial life skills training to the community members involved in prevention activities. In traditional societies, such as that of Upper Guinea where young women are less exposed to activities outside of their homes, special efforts must be made to better reach women in a culturally appropriate manner. Information on HIV is sometimes more acceptable and accessible for community members if presented within the context of STIs.

88 Strategic Communication in the HIV/AIDS Epidemic l

Coalition-building at the local and district levels is a very effective way to motivate people to share resources. However, the challenge remains on how to sustain such a coalition.

Source: Bakadi, 2002; Fonseca-Becker et al., 2003

Promoting a Balanced Approach to Prevention Messages: The “ABCs” of Safer Sexual Practices Rationale When the HIV/AIDS epidemic emerged in developing countries in the mid-1980s, many of those involved in the early prevention efforts believed that condoms would be the most effective means to curb the spread of HIV. Thus, much of prevention messages and programs focused on “C,” condoms, rather than “A,” abstinence, or “B,” being faithful to one’s partner or reducing the number of one’s sexual partners. Starting in the 1970s, several organizations working at the international level developed and refined strategies for the social marketing of condoms in connection with international family planning programs. US-based social marketing firms such as Population Services International (PSI) had programs in a few developing countries in the early 1980s, and by the end of the decade, they had expanded condom social marketing to sub-Saharan Africa. Similarly, SOMARC, managed by the Futures Group, operated in an additional seven sub-Saharan countries. These organizations took bold action in publicizing the risk of HIV/AIDS and in educating the public on the role of condoms in its prevention. The publicity surrounding social marketing helped to break the silence, especially in countries where governments had yet to develop their own strategies. Brand names such as “Prudence” and “Protector” became household words, and condomrelated paraphernalia (T-shirts, windshield decorations, baseball caps) was a familiar sight in countries with a social marketing program. Condom sales figures experienced dramatic increases in almost all countries where social marketing programs were implemented. In fact, there has been good progress in increasing condom sales in many countries in the last decade. For instance, condom sales in India have increased by 13 percent per year since the 1970s (Bentley et al., 1998). Other countries record similar success in condom distribution, including sales: Uganda—4 million in 1996 to 120 million in 2001 (Kirungi, 2001) and South Africa—6 million in 1994 to 198 million in 1999 (Myer et al., 2001). Part of the reason for this success was the perceived efficacy and low cost of condoms. The public health community was successful in promoting products or services that offered low-cost solutions, such as packets of oral rehydration salts or contraceptive pills. When HIV emerged, condom promotion seemed to be, potentially, the most cost-effective means of stopping its spread from a public health standpoint.

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Another reason for this concentration on “C” was the collective inexperience in promoting other options such as abstinence and partner reduction. “A” and “B” do not figure prominently as part of family planning programs aimed at couples assumed to be mutually monogamous and condom use seemed simple to explain as a means of preventing transmission. Few countries developed communication programs that were explicitly aimed at influencing social norms or presenting “A” or “B” in a positive light. This lesser focus on “A” and “B” in contrast to “C” may also reflect a widespread belief about the futility of promoting behaviors that require foregoing sexual gratification. However, recent analysis has indicated that although condoms may have played a significant role in reducing HIV infection in highly vulnerable populations—such as sex workers and their clients and MSM—they have had little impact on HIV rates in the general population in high prevalence countries. Married couples or regular partners seldom use them. In fact, HIV seroprevalence has continued to rise along with the sale of condoms in countries such as Kenya, South Africa, Botswana, and Cameroon (AIDSMARK, 2002). In spite of sales such as those mentioned, one reason sometimes given for this apparent failure of condoms to make an impact is supply. It has been calculated that in Africa, over the last decade, only 4.6 male condoms per year were available for every man between 15 to 59 years (Shelton and Johnson, 2001). This number would cover only a tiny fraction of sexual encounters. One reason sometimes cited for the lack of demand for condoms is the continuing controversy over their reliability. Religious groups continue to spread information that they may break or tear and are not foolproof, either for contraceptive purposes or for protection against HIV or STIs. In a comprehensive review of the effectiveness of condoms, Hearst and Chen (2003) have summed up their findings as follows: A good, simple answer may be to say that condoms appear to be about 90 percent effective when used consistently and properly. With perfect use, effectiveness may be even higher, though not 100 percent. With inconsistent or improper use, condom effectiveness is certainly lower. These results should come as no great surprise, as they closely match data on the effectiveness of condoms for preventing pregnancy (Weller and Davis, 2002). Although there is some evidence that condoms might occasionally be permeable to virus-size particles (Ahmed et al., 2001), the vast majority of condom failures result not from leakage through latex but from “flow” factors, such as breakage, slippage, or improper use (NIAID, 2001). There is no reason to expect that the frequency of use should differ when condoms are used to prevent HIV infection or pregnancy. Another study analyzed survey data from six African countries and concluded that the main reason for low use of condoms is demand; people say they trust their partner and therefore see no need for condoms or dislike using them. Researchers concluded that most people do not identify lack of availability and cost as barriers to condom use (Longfield et al., 2001). In fact, there has been little success in convincing people to use condoms in the context of a steady relationship—married, or otherwise. For instance, in Nigeria, where 65 million condoms were distributed in 1999, only 2 percent of sexually active respondents reported that they always used a condom with their spouse or other steady partner in the past two months, compared to 33 percent for boyfriends and girlfriends and 67 percent for casual

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partners (Van Rossem et al., 2001). For many people, condoms have become associated with sexual activity outside of marriage, and in many countries religious groups have discouraged or condemned their use, not only for HIV protection but, in the case of the Catholic Church, for family planning purposes. In fact, condom use even remains relatively low (17 and 33 percent) in discordant couples (when only one partner in marriage or a steady relationship is HIV-positive) due to factors such as the desire for intimacy, gender inequity, and desire to have children in spite of HIV (Hearst and Chen, 2003). In recent years, more and more evidence has emerged about the need for a balanced approach to prevention messages. For example, an in-depth review of what happened in Uganda concluded that “A” and “B” have been more important than “C” in achieving success, although all three factors may now be responsible for sustaining those achievements (Box 3-6). There is evidence that the positive trends in Uganda are also taking place in at least a few other African countries. For instance, in the Bukoba district of Tanzania, HIV incidence declined from 4.8 percent per year in 1987–89 to 0.6 percent per year in 1993–96 (Stoneburner and Low-Beer, 2002). Also, in Lusaka, Zambia, HIV prevalence among 15 to19year-old pregnant women fell from about 30 percent to about 15 percent between 1993 and 1998 (Fylkesnes et al., 2000; US Census Bureau, 2001). Condom use also increased, but only slightly. The apparent decline in HIV appears to have more to do with reductions in casual partners than with increased condom use (Bloom et al., 2000; Grulich and Kaldor, 2002). Similar population-based studies in 1996 and 1999 show that the proportion of men and women in Zambia in all age groups reporting sex with casual partners fell substantially (Agha, 2002). Data from different countries demonstrate the value of maintaining this balanced approach to prevention. No country seems to have succeeded in reducing and maintaining the reduction of HIV/AIDS incidence and prevalence based on only one of the ABCs. For example, data from Thailand on the widely touted “100 percent condom campaign” indicate that in addition to increased condom use, Thai men also reduced their number of visits to brothels, a fact less often reported (Hogle, 2002). In fact, there may be more similarities than differences between Uganda and Thailand, as pointed out in Box 3-7. What about the prevention experience in relatively lower-prevalence countries? The Dominican Republic, with an estimated HIV prevalence of only 1 percent (UNAIDS, 2002a), has been cited as a major success story for the social marketing of condoms. However, it appears primary sexual behavior changed. Green and Conde (2000) found that 79 percent of respondents in a national survey reported they had changed their behavior due to the fear of AIDS. The majority (52 percent) of these claimed they had become monogamous or reduced their numbers of sexual partners, 15 percent reported use of condoms, 14 percent cited having sexual relations only with people they knew, 9 percent reported avoiding commercial sex, 2 percent claimed they had become abstinent, and 3 percent had not yet begun to have sexual relations. However, there is no simple answer to the question of what works best. In Senegal, the HIV prevalence rate never rose above 1.1 percent and was reported to be 0.5 percent at the end of 2001 (UNAIDS, 2002a). Although conservative cultural norms of relying on “A” and “B” are often cited as contributing to this achievement, in fact Senegal has taken a very aggressive and comprehensive approach to fighting HIV/AIDS. Senegal reports large increases

Communication for Change 91 Box 3-6: The R ole of the ““AB AB Cs” in R educing HIV R ates in Uganda Role ABCs” Reducing Rates An objective review of the data indicates that the major declines in HIV incidence in Uganda clearly preceded the incorporation of large-scale condom promotion into AIDS control efforts. Condom social marketing did not get off the ground on any large scale until the mid-1990s, after the major decline in HIV incidence. By 1995, only 6 percent of Ugandan women and 16 percent of Ugandan men had ever used a condom, with consistent condom use being much lower. Ugandans now report much higher rates of condom use, particularly with casual partners. This may be helping to keep incidence rates down since the late 1990s but cannot be given major credit for the larger fall in incidence that took place before then. So what did cause HIV incidence rates to fall in Uganda in the late 1980s and early 1990s? The available evidence suggests that the main cause was a substantial change in sexual behavior, particularly a reduction in non-regular partnerships. For example, in 1995, only about 12 percent of Ugandan males and 5 percent of Ugandan females between 15 and 19 years-old reported having sex with a non-regular partner in the past 12 months. This compares with about 50 percent and 30 percent, respectively, in neighboring countries. Other age groups showed similar differences in comparison to neighboring countries. In contrast, population-based surveys in Uganda in 1989 found that the proportion of adults reporting casual sex in the past 12 months more closely matched the higher levels that continue to be reported in neighboring countries. Whether as a result of individual rational decision-making or through a more complex process of redefining community norms of behavior, Ugandans seem to have reduced their level of sexual risk behavior from what was once a level typical of their region to what is now a much lower level. Comparisons with neighboring countries suggest that changes in numbers and types of partners have much more to do with the decline in HIV incidence in Uganda than do rates of condom use, which were lower in Uganda than in neighboring countries in the mid-1990s. Simulation models confirm the decline in HIV incidence observed in Uganda to be consistent with what would be predicted from a roughly 50 percent decrease in casual partnerships. This does not mean that condoms had no role in the Ugandan success story. Although overall rates of condom use were comparatively low at the time that incidence rates were declining, even low levels of condom use in the general population can still make a difference if condom use is higher among subgroups of the population at highest risk. This may apply in Uganda, where condom use in commercial sex is very high. Also, condom use may have been higher among the young than among adults in general and thus may have contributed to the decreased HIV incidence observed in that age group. Furthermore, the public debate about condoms that took place in Uganda in the early 1990s may have contributed to the general level of awareness and communication about AIDS and thereby contributed to the process of risk reduction even before large numbers of condoms were used. Source: Hearst and Chen, 2003

in condom sales and distribution: 800,000 in 1988 to 7 million in 1997 (Meda et al., 1999). In addition to this free distribution, 3.6 million socially-marketed condoms were sold through 2,200 sales points in 2001 (USAID, 2002a). As early as 1969, registered sex workers in this Muslim country underwent mandatory quarterly health check-ups and received treatments for STIs. Officials have kept close watch on the safety of the blood supply. Condoms have also played a significant role as they are distributed free of charge to sex workers, patients with STIs, youth, and those employed in the uniformed services.

92 Strategic Communication in the HIV/AIDS Epidemic Box 3-7: Lessons from Success in Uganda and Thailand The experiences of Thailand and Uganda have many differences. In particular, condoms appear to have played a more central role in the success of AIDS prevention efforts in Thailand than in Uganda. These represent differences of degree and circumstances rather than a fundamental difference in approach. In fact, the Thai and Ugandan experiences are more similar than dissimilar. Both countries responded to the AIDS epidemic quickly and decisively. In both, the AIDS control programs had leadership from the highest levels. Both were multi-sectoral and achieved a broad public consensus of support. Both avoided stigmatization and included important aspects of care for the HIV-infected. Both the Thai and Ugandan efforts were endogenous responses to a locally perceived threat. Both countries benefited from international public health and scientific collaboration, and international donors played essential roles in program financing; yet in both cases, the impetus behind prevention efforts was local. While efforts in Thailand emphasized condom use, particularly in commercial sex, they did not emphasize partner reduction. Moreover, Thais responded with a substantial reduction in their number of partners, particularly in the context of commercial sex. While efforts in Uganda emphasized partner reduction, they did not discourage condom use. In fact, condom use has recently reached high levels in the general population of Uganda and has probably been high for much longer in commercial sex. The public promotion and debate regarding condoms ended up encouraging not only condom use but also decreased numbers of partners in both countries. The difference in emphasis between condoms and partner reduction probably had more to do with differences in local epidemiology, particularly differences in the prominence of commercial sex in HIV transmission, than with underlying differences in philosophy. In both cases, the result was a response to the HIV epidemic that seemed to work better than a cookbook approach based on generic international recommendations. A Thai-style program emphasizing condom use in commercial sex and prevention for injecting drug users would not have worked in Uganda, where these are not the main factors driving the epidemic. A Ugandan-style program emphasizing partner reduction for the general population probably would not have worked well in Thailand. In both cases, what did work was a determined, multi-sectoral effort enlisting broad public support and responding to local realities. Source: Hearst and Chen, 2003

It is evident that to successfully combat the HIV/AIDS pandemic, countries need broader “ABC” approaches tailored to local needs. Such approaches can attract a greater number of organizations to join the cause, including those that might reject direct involvement in condom promotion, such as faith-based organizations.

Formative Research The following questions form the basis of formative research needed to design and launch a communication program for the ABCs: l

What is the profile of the intended audience? What is their age, gender, socio-economic status, and interests?

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What knowledge and attitudes do they have related to HIV transmission and prevention, including perception of risk of HIV/AIDS? What are their predominant sexual behaviors? (e.g., average age of sexual debut, number of sexual partners, sexual activity outside of marriage/steady relationships, polygamy, and sexual practices/sexual orientation.) What are their present levels of condom use? Other contraceptive use? What social norms most influence the group and their communities regarding sexuality and STIs, including HIV/AIDS? What misconceptions and myths do they have with regard to HIV and AIDS? What is their ability to delay sexual debut, maintain abstinence, or negotiate condom use? What level of “self-efficacy” do they report and what skills do they exhibit? What communication channels do they prefer? What are their media habits? What is the level of access to supplies and services, including condom supplies, VCT, and STI services? Are there particular segments of society that will reject condom promotion, even within a balanced ABC approach? How will they be included in the program? Is it possible to communicate separate A, B, C messages to different audiences? (e.g., delay of sexual debut or continued abstinence for those who are unmarried and/or not yet sexually active, secondary or periodic abstinence or use condoms for those who are sexually active)

Audiences and Actors While there are many audiences and actors relevant to increasing safer sex practices, the following are among the most critical when considering ABC programing for the general population: Young P eople: Youth can be segmented into subgroups that enable programmers to respond People: more directly to their particular needs. Usually, programs segment young audiences into 10 to 14 year-olds and 15 to 19 year-olds. The definition of young people reaches up to 24 years of age or beyond in some countries, and each age group may have particular needs, perceptions, beliefs, and values. Men and W omen of R eproductive Age: All men and women of reproductive age face inWomen Reproductive creasing risk of HIV/AIDS, especially in high-prevalence countries or those in transition. The combined effect of physiological susceptibility and gender imbalances in marital or long-term relationships leaves women particularly vulnerable to HIV infection. In many societies, men indulge in multiple sexual partnerships, patronize commercial sex workers, or partake in bisexual activity, putting their spouses or regular partners at great risk. Influential Individuals and Societal Groups: Civil society organizations, religious, political or traditional leaders, and other influentials are critical secondary or tertiary audiences and potential actors. First, through their platform and constituencies, they can make an issue

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public and promote open dialogue. Second, these influentials can directly promote individual risk reduction behaviors such as fidelity, condom use, or partner reduction among their constituencies.

Strategic Approaches The key to the successful promotion of the ABCs is to present a balanced set of options and to encourage use of the option that best fits individual lifestyles and needs. Although all three options are available, specific segments of the general population are likely to opt for one over the others, and communication programs need to position the ABC options accordingly. The following strategies and channels are useful in a holistic, integrated communication plan for the ABCs of prevention. We expand on many of them in much more depth elsewhere in this book. l

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Interpersonal Communication and Counseling: Interpersonal communication and counseling by health, social, and educational service providers are key strategies for communication on the ABCs. TV and R adio: Many innovative strategies can be used in the form of entertaining Radio: TV and radio spots, drama, and other creative formats for the dissemination of ABC messages. The program should be branded with a well-researched logo that will provide high visibility and identification. Peer Education: This approach constitutes a potentially powerful and frequently used channel (see Chapter 6). Hotlines and Information T echnologies: Telephone hotlines and Internet technology Technologies: are fast becoming the cutting edge of prevention and care programs (see Chapter 6). Group and L ocal Media: Facilitation of “ABC” choices through life skills sessions Local can be linked with the overall program through mass media (See Journey of Hope, Box 3-4).

Key Issues to Communicate However, the challenge for communicators is not just choosing channels. The challenge lies in the complex issues that surround arriving at an effective and acceptable formula for communicating a combination of ABC messages through different channels. Because of the power and reach of the mass media, communicators have been criticized for promoting early sex and sex outside of marriage. In Zambia, TV spots promoting the use of condoms among male youth were deemed acceptable by media gatekeepers but one showing young, unmarried females having condoms handy derailed the whole HEART Campaign (see Zambia case study) for an entire year. In Kenya, one particular TV spot within a condom social marketing program “raised a ruckus” and had to be withdrawn, as documented in Box 3-8.

Communication for Change 95 Box 3-8: A Controversial Condom Advertisement A “racy” television ad for socially marketed condoms made Kenyan “adults fume and adolescents squirm,” according to the Associated Press. In the ad, two young women who appear to be teenagers are waiting at a train station on a sunny day. A handsome young man walks in from the heat to a water faucet and pours water on his head and chest, taking off his shirt. The two women stare, licking their lips; one drops her plastic water bottle, which cracks and starts leaking. The young man walks over, takes a condom from his pocket, and puts it on the water bottle, stopping the leak. The television spot was well made and conveyed a high level of sexual energy. This advertisement created a great deal of controversy. Opponents claimed that it encouraged promiscuity among young people. Proponents countered that it encouraged condom use among atrisk young people and demonstrated, among other things, that condoms are strong and waterproof. Neither side could base their opinion on any objective data as to whether the advertisement did or did not encourage sexual activity among young people. Sources: Aetna InteliHealth, 2002; Hearst and Chen, 2003

“A” for Abstinence: Abstinence is particularly appropriate for adolescents who should recognize it as the surest means of avoiding HIV/AIDS and protecting their own future plans. In fact, it has been suggested that “D” for delay should be added to “ABC menu.” Delay of sexual debut is central to the promotion of abstinence, and a number of countries have developed communication programs that encourage adolescents to wait. Evidence suggests that in Uganda the medium age of sexual debut among both men and women increased by approximately one year between 1989 and 2000 (Bessinger et al., 2002). The proportion of young people of ages 15 to 19 years reporting that they never had sex rose in Uganda between 1989 and 1995: from 31 percent to 56 percent for males and 26 percent to 46 percent for females (World Bank, 1999). Adolescents often experience conflicting emotions about sexual debut, including sexual relations before marriage. On the one hand, many feel tremendous social pressures from their peers to engage in sex: to “be a man,” to “be cool,” to please a boyfriend/girlfriend, to give and receive affection, to get favors and gifts. Many experience the strong biological drive that accompanies adolescence, which may lead them to want to experiment and experience the pleasure that sex brings. On the other hand, many young people recognize that in today’s world, their best protection is to delay or avoid sex during their adolescent years. Religious teaching, family values, desire for educational advancement, and related factors may encourage them to abstain from sex. Research conducted in Zambia revealed that youth, and young girls in particular, wanted to have concrete messages that provide them with reasons to abstain or return to abstinence (see Zambia case study). Equipping young people with the information and particularly the life skills they need to negotiate and maintain a positive approach to reproductive health is essential in the fight against HIV and AIDS. The benefits of this approach will not only help prevent HIV transmission among young people today; it will also help establish appropriate behavioral patterns as this cohort moves into adulthood. The primary audience for messages about abstinence is the adolescent who is not yet sexually active. However, programs can also encourage those who have had sexual relations

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to return to abstinence or delay relations for a substantial period. This option is also available to individuals whose partners are stationed elsewhere for long periods of time, although this group has not been a primary audience for abstinence promotion, to date. Finally, some PLHA may opt to discontinue having sexual relations, but such issues are better addressed in programs directed specifically to them. artner: Being faithful to one known and trusted partner or “B” for Being F aithful to One P Faithful Partner: at least reducing the number of sexual partners are usually messages aimed at unmarried but sexually active individuals and to married or common-law couples. It should be clear that you should know your and your partner’s HIV status and/or use condoms consistently if you have sexual relationships with an HIV-positive person or with more than one known and trusted partner. In other words, reducing sexual partnerships alone may not be an effective HIV-prevention strategy. One problem with young people is the often short-lived nature of their sexual relationships, followed closely by new ones. Thus, being faithful to the current partner may not provide protection if either partner practices “serial monogamy,” a series of short relationships, faithful while they last. In such situations, “B” is not foolproof for a number of reasons: the “one partner” may be infected unbeknownst to the other or the current “faithfulness” may have followed multiple sexual relationships by one or both of the partners. So having fewer sexual partners reduces but does not eliminate the risk of infection. Although “B” has been less utilized than “A” or “C,” it is an important part of the “ABC trilogy.” Evidence from Uganda suggests that partner-reduction has been one of the factors in the decline of HIV prevalence (Box 3-6). As in the case of abstinence, communication programs must address social norms related to these practices. It is important to provide positive role models that face such dilemmas and experience the positive consequences of making the right decision. Both mass media and community-level interventions, particularly those using an entertainment–education format, can be effective in communicating the changing norms of a society on this issue. “C ” for Condom Use: The audience for condom promotion potentially includes all individuals “C” who are sexually active. However, experience in many countries indicates that young people and men having sex outside of marriage, including with sex workers, are most receptive to condom use. As discussed, social marketing programs created widespread awareness of condoms and their role in the protection of HIV/AIDS throughout the developing world. Condoms, whether brand specific or generic, are now readily available in most developing countries in health centers, pharmacies, and neighborhood kiosks, as well as places such as truck stops, motels, bars, and discos, where they are often positioned with casual sexual activity or at least sex outside of marriage. Specialized types of condom promotion include dual protection and dual-method use. Dual protection refers to the benefit of the condom in protecting against both pregnancy and STI/HIV/AIDS. This benefit of condoms may be particularly attractive to young people who need both types of protection, and because they have sex on a sporadic basis (they may not feel the need to be on birth control or more continuous contraception). Dual-method use, by contrast, involves the use of condoms to prevent STI/HIV/AIDS and the use of another contraceptive to prevent pregnancy. To date, dual-method use is relatively rare, for the

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reasons that married couples tend to dislike condom use, as noted, and using two methods requires additional initiative and expense.

Challenges and Lessons Learned The Non-R ational Nature of Sexual Behavior: Sex and sexual transmission of HIV take Non-Rational place in a domain of very complex and emotional behaviors that affect people’s risk perception: feelings of love are equated with trust and often overpower personal caution and responsibility. Sexual encounters may be mistaken for expressions of love. Discussing sex or condom use may be taboo. Mainstream portrayals of romantic love in the media send out contradictory and counterproductive messages of purity, submission, and love as uncontrollable passion and intoxication, and they avoid the issue of responsible protection (Ndabamenye, 2000). As Perloff (2001) notes, good intentions may fall by the wayside in the presence of strong sexual drive or desire for emotional fulfillment, especially if alcohol or drugs are involved. Alcohol and drugs also have a very negative effect on the correct and consistent use of condoms. Stigma A ttached to Condom Use: Ironically, the use of condoms—one of the most effective Attached means of preventing HIV transmission—carries a certain stigma that deters individuals from using them. Asking one’s partner to use a condom implies that the partner, or the asker, has had other partners and may have an STI, including HIV. Condom negotiation can ruin the romantic nature of the encounter or worse yet, lead to violence against the woman who requested it. Again, communication can play an important role in increasing the social acceptability of condoms and influencing social norms around their use. An amusing TV spot in Ghana portrays an amorous couple who move hastily toward their love-hut, but the action stops short when the man says he does not want to use a condom. They emerge from their hut engaged in loud bickering. The man, realizing his only hope to complete his lovemaking, relents and returns, agreeing to use a condom. Promoting AB CT ogether: There is a good deal of debate on whether “C” should be promoted ABC Together: in the same campaign or program as “B,” and especially with “A,” including delay of sexual debut by young people. In many countries, political and religious leaders have taken public positions against the widespread promotion of condoms, calling instead for a focus on abstinence for the unmarried and fidelity within marriage. In some countries different groups have arrived at a compromise, such as eliminating the word “condom” from public service announcements or referring audiences to other organizations that distribute condoms. A Note of Caution in the Use of AB C Messaging: We offer a word of caution about sendABC ing the message that condom use is advisable only if abstinence and faithfulness fail, because this message can be misleading or even dangerous. For example, women who are being faithful to an unfaithful husband need to be advised to use condoms, while sexually active young couples cannot rely on each other’s ideas of “serial monogamy.” They need to go for HIV testing before having unprotected sex. In a second example, condoms should be used by sero-discordant couples (i.e., where one is HIV negative and the other positive).

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On the positive side, it should be noted that in Thailand, the national HIV/AIDS program promoted condoms widely and visibly on the mass media but did not discourage men from visiting commercial sex facilities. In spite of this, the percentage of men visiting these establishments fell dramatically (Stoneburner and Low-Beer, 2002). A similar result was demonstrated in Brazil, where condom promotion directed at male port workers was not only instrumental in increasing condom use, but also decreased the reported percentage of men having casual partners (Hearst et al., 1999). However, in spite of these findings, surprisingly little is known about why the above positive results were obtained or the overall effects of different approaches to condom promotion on sexual risk behavior. According to Hearst and Chen, Research studies and program evaluations that examine the effect of condom promotion strategies usually focus on condom use as their outcome. Seldom do they measure numbers and types of partners with sufficient rigor to determine to what extent a particular condom promotion strategy influences other aspects of sexual risk. The possibility that interventions presenting casual sex with a condom as socially acceptable, enjoyable, and safe might increase sexual risk cannot be discounted. In high-risk groups that are already engaging in such behaviors, it is appropriate that the main consideration is to find the approach that best promotes condom use. But priorities might be different for people not currently practicing high-risk behaviors because the balance of risk versus benefit may be different, with greater potential to do harm (Hearst and Chen, 2003). HIV/AIDS prevention programs should pay more attention to interactions between ABC strategies. These interactions are often positive but might also, at times, be negative. Prevention programs should try to maximize the positive interactions and minimize the negative ones. Too often, different prevention strategies are viewed as competing alternatives rather than examining how they might complement and reinforce each other. At the very least, different approaches should carefully avoid undercutting each other (Hearst and Chen, 2003). However, there is evidence that when communication programs are carefully planned and researched, the ABC messages can be promoted independently to different audiences without having a negative spillover effect. This has been demonstrated in Zambia, where A and C were successfully promoted within the same mass communication campaign (See Zambia case study).

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Case Study: Communicating Safer Sex in Zambia Background: The Zambia Sexual Behavior Survey (C.S.O., Zambia, 1998) reported that 37 percent of boys and 27 percent of girls have already had sex by the age of 15. By age 19, only 16 percent of youth in Zambia reported they “have never had sex.” Surveys in high-density urban areas indicated that by the age of 19 years, the majority of sexually active females had been pregnant at least once. Condom use was inconsistent and the majority of youth (84 percent) reported not using a condom the last time they had sex. Studies in Zambia show that the HIV prevalence for women 15–19 years old is 6.6 percent and for men of the same age 1.9 percent, the difference largely attributed to young women’s physical susceptibility to HIV and the cultural norm of girls having sexual relations with older men. Although government and NGOs had previously implemented awareness campaigns for young people, these efforts had led to only minor changes in youth behavior. Project Strategy: Against this background, the HEART—Helping Each Other Act Responsibly Together—campaign was born. HEART was designed specifically for young people of ages 13–19 years. The overall objective of the program was to promote healthy sexual behaviors among young people by reinforcing existing “safer” behaviors and changing behaviors that are “unsafe.” One key to the success of this intervention was the leadership youth provide in setting the agenda. Recognizing that youth know youth culture best, young people were asked to serve on the campaign design team, to participate on a Youth Advisory Group, to articulate specific campaign objectives, to review message concepts and execution, and to conduct focus groups and in-depth interviews related to the campaign. The specific campaign objectives included: l l l l l

Promoting continued abstinence among those already abstaining, Making abstinence “hip, cool, the in-thing,” Increasing consistency of condom use among sexually active youth, Positioning condoms among sexually active youth as a cool part of their sexual lives, and Making youth understand that even a person who looks healthy can be infected with HIV.

Campaign materials included TV spots, mainly for urban youth, and radio spots, largely for rural youth, which focused on abstinence and consistent use of condoms. Complementing the electronic media were a variety of other materials including posters, car stickers, messages on buses and exercise books, a CD with a wide selection of songs, and three musical videos with the key messages. A key campaign message “You can’t tell by looking,” stressed that one cannot tell a person has HIV by that person’s appearance. Some of the media spots dealt with abstinence, such as: l

Choices, where abstinent boys reminded their peers why they choose to be abstinent.

100 Strategic Communication in the HIV/AIDS Epidemic l

“When He Says...”, where boys spoke a series of lines to which girls replied “no to sex” and maintained their “virgin power/virgin pride.”

The campaign was evaluated through a quasi-experimental, pre- and post-test design. The evaluation’s results demonstrate that “both abstinence and condoms can be promoted in a youth campaign, and with positive results in achieving both types of targeted behavior change. This is an important finding because those who favor abstinence promotion sometimes argue that promotion of this along with condoms (A and C) sends a mixed message. Or that condom promotion undermines the abstinence or delay of debut message, therefore it may make more sense to promote one or the other, but not both at the same time.” (Hearst and Chen, 2003). Some of the more notable findings are as follows: l

l l

l

l

l l

The HEART campaign reached over 50 percent of the intended audience; 71 percent of urban and 37 percent of rural youth saw one or more of the spots. Young women, both urban and rural, were as likely as young men to have seen some or all of the spots. Comprehension of the messages was good. Between 60 percent and 90 percent of viewers spontaneously identified the correct message of any given spot. The evaluation found that 75 percent of males and 68 percent of females who were exposed to the campaign began talking with others about AIDS, abstinence, and using condoms as a result of the campaign. Among women who are sexually experienced, 82 percent of campaign viewers, contrasted with 69 percent at baseline and 64 percent of impact survey non-viewers, reported they feel confident that they have “the ability to say no to unwanted sex.” Using logistic regression and holding the independent variables age, educational attainment, urban/rural residence and sex, constant, data show that viewers were 1.68 times more likely to report primary or secondary abstinence than non-viewers. There was a dose effect: the more health communication spots a respondent recalled, the greater the likelihood that the respondent was abstinent. Among both men and women, the perceived efficacy to use condoms was positively and significantly correlated with viewership. Logistic regression analysis found that viewers were 1.91 times more likely to have ever used a condom and 1.63 times more likely to report condom use during their last sexual encounter, when contrasted with non-viewers (holding sex, age, residence, and education constant). Older, better educated respondents were more likely than others to use condoms. Interestingly, women were more likely to report condom use than men when background characteristics were held constant.

The evaluators recommended that the program should: l

Continue to support and encourage abstinence or “return to abstinence” as a viable alternative.

Communication for Change 101 l l

Convey the idea that abstinence is a social norm among young people. Portray consistent condom use as a social norm.

The report noted that “fear of HIV infection” was the main reason given for abstaining from sex. Those who were abstaining, who had not been exposed to the campaign, were more likely to cite “not having a partner or the opportunity for sex.” The report points out that young people in areas of high HIV prevalence will respond positively to delay/abstinence messages by choosing or maintaining such behavior. Source: Hearst and Chen, 2003; Underwood et al., 2001

Communication to Reduce Stigma Rationale Stigma is a recurrent theme throughout this book because of the devastating role it plays in the lives of PLHA and the barrier it presents to prevention. Stigma results from the devaluation of individuals or groups of people who are perceived to be HIV-positive or living with AIDS (whether or not they manifest symptoms of AIDS). Stigma leads to acts of discrimination, which occur when “a distinction is made against a person that results in his or her being treated unfairly and unjustly on the basis of their belonging, or being perceived to belong, to a particular group” (UNAIDS, 2002a). Perceived stigma can have powerful psychological consequences for the victim, leading to depression and feelings of lack of self worth, which further impacts on the health status of PLHA (UNAIDS, 2002b). Stigma and discrimination can be manifested at different levels and in different contexts: policy and legal, institutional (schools, health care facilities, workplace), community, family, and individual. For example, being HIV-positive or simply coming from a high prevalence country can result in limitations on international travel and migration or mandatory HIV testing. Children of infected parents have been excluded from collective activities and expelled from school. Stigma is a consequence of the association people make between HIV/AIDS and pre-existing prejudices, shame, blame, and fear related to sexuality, gender, race/ethnicity, and class. HIV/AIDS is associated with sexually transmitted diseases, homosexuality, promiscuity, prostitution, and sexual “deviance” or assumptions about “African sexuality,” as well as drug use and poverty (Kidd and Clay, 2003; Parker et al., 2002). A woman’s decision not to breastfeed in a high prevalence country may raise suspicions of her being HIV-positive. These suspicions can lead to breaches of confidentiality at her health care clinic and stigmatizing gossip in the community and family. Stigma has resulted in

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people being denied food or care, evicted from their homes or workplaces, and violently attacked and murdered (Parker et al., 2002). Fears of contagion, disease, and dying are compounded by misinformation about how HIV is transmitted and what it means to live with HIV and AIDS. People, however, often seem largely unaware that their attitudes, language, and actions are stigmatizing. In fact, care and support for PLHA often coexists with stigmatizing attitudes and acts of discrimination in the same community (ICRW Research Update, 2002). Fear of stigmatization prevents PLHA from disclosing their status, protecting their sexual partners, asking friends or family for support, and making long-term plans for their dependents. Various scare messages such as “AIDS kills,” as well as stereotypes associated with PLHA, have clearly contributed to the perception that AIDS only affects “others,” especially those who are already marginalized, such as sex workers and MSM. People may not be willing to get tested or disclose their status from fear of being associated with such groups. Stigma limits the effectiveness of prevention efforts. Because of the stigma attached to HIV and AIDS, people may deny that they are at risk, avoid getting tested, and may also avoid protective behaviors or discussion of HIV/AIDS altogether. Those who learn they are HIVpositive may continue former risky behaviors or reject healthy behaviors to avoid arousing suspicion. Stigma has also led political leaders in many countries to deny that HIV and AIDS are problems that need urgent action (UNAIDS, 2002b). Stigma negatively affects the seeking of care and support. Expecting negative repercussions, PLHA may avoid seeking care from health care professionals or social workers until symptoms become severe. In fact, stigma has been exhibited frequently by providers at health care facilities where people go to get tested or to receive care and support. Negative perceptions of PLHA shape provider and caregiver behavior. Blaming the patient for his/her illness can lead to less than adequate care or even denial of care and breaches of confidentiality. Unless care providers are thoroughly trained in how to empathetically deal with PLHA, they may inadvertently or directly stigmatize the latter, even though they may have better knowledge than most people on how HIV does and does not spread. Stigma and discrimination have tremendous costs. HIV infections increase as people avoid prevention behaviors and getting tested. Health care costs grow because of the difficulties of treating opportunistic infections at advanced stages. Workplaces lose valuable employees. Individuals and families struggle to cope with the illness on their own. Because stigma is rooted in social attitudes and cultural beliefs, the issue is difficult to tackle. However, if we do not address the stigmatization of PLHA, any effort to fight HIV/AIDS will have limited results.

Formative Research Key research questions are as follows: l

Do people freely talk about HIV and AIDS (at home, at church, in the store, at work)?

Communication for Change 103 l

l l l l l l l l l l

Do people have accurate knowledge about HIV and AIDS transmission and care, especially about the lack of transmission through casual contact such as shaking hands? What are people’s images of HIV and AIDS and the language used to discuss it in the mass media? Is HIV/AIDS associated with particular groups or particular behaviors? Are there reports of discrimination in the community, workplace, and health care setting? What are the experiences of PLHA? Are they afraid to disclose their status to family and friends? What are people’s attitudes about condom use and HIV testing? What are various opinion leaders (including religious leaders) saying about HIV/ AIDS and who is at risk? What policies and laws exist with regard to HIV and AIDS discrimination? What policies and laws presently exist that protect or discriminate against PLHA? How have educational institutions dealt with PLHA and their children? Do support networks exist for PLHA? Are PLHA involved in HIV/AIDS prevention and care activities? Do programs already exist to promote acceptance and support for PLHA and how successful have they been?

Audiences HIV/AIDS-related stigma exists in varying degrees throughout the world. Because it stems from and reinforces pre-existing attitudes and discrimination within the social fabric of different societies, stigma reduction strategies should target many different subgroups within a given population, in addition to the general public. Groups that play an especially significant role in influencing stigma include: l l l l l l

Policymakers and opinion leaders (including traditional/social leaders, political leaders, business leaders, religious leaders) Health care workers PLHA and their families and friends PLHA’s caretakers in the community and home Media workers and journalists International and local NGOs, CBOs, and FBOs involved in HIV/AIDS work

Strategic Approach Because the intensity and focus of HIV/AIDS-related stigma and discrimination differ by country, it is difficult to suggest a standardized strategy to address stigma. Strategies must

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be carefully tailored to respond to the local environment at a particular time. For example, in countries where HIV prevalence is low or where the disease is not highly visible, communication efforts on stigma need to first focus on high-risk behaviors of highly vulnerable groups and prevention efforts that address these. However, in areas where the HIV/AIDS epidemic is more widespread, the program also needs to focus on stigma as it relates to care and support in the general population (e.g., confidentiality in getting tested before marriage, using a replacement for breastfeeding, protection of orphans). Similarly, no one intervention will effectively eliminate stigma. Rather, a combination of the strategies, such as those that follow, may be needed. Advocacy: Advocacy is needed to create and enforce laws and policies that support PLHA and punish discrimination. For example, the Thai Business Coalition on AIDS advocates with employers about the benefits of nondiscriminatory workplace policies and facilitates presentations and workshops about HIV/AIDS (UNAIDS, 1997a). As a result, HIV-positive employees have reported increased acceptance and support, and staff members have become more willing to volunteer in organizations working to address HIV/AIDS. In India, the Lawyers Collective HIV/AIDS Unit works to influence HIV/AIDS legislation, informs PLHA and organizations addressing HIV/AIDS about appropriate legislation, and directly takes up cases of discrimination in the courts (Lawyers Collective HIV/AIDS Unit, 2002). Interpersonal and Group Communication: Because stigma is usually based on ignorance and fear, it is important that communication interventions create dialogue and individual contact between PLHA and uninfected people. Program planners must also give careful attention to the design of messages, correcting misconceptions about HIV transmission, so that they do not inadvertently contribute to HIV/AIDS-related stigma. For example, a focus on “risk groups” rather than “risk behaviors” reinforces stigma. PLHA involvement in the design and implementation of communication interventions has been shown to reduce PLHA’s own fear of stigmatization (Horizons, 2002a). Communication interventions can target specific audiences to reduce stigma. In Tanzania, a school-based program involving HIV/AIDS education, including small group discussions and role-plays, resulted in a significant improvement in attitudes toward PLHA (Klepp et al., 1997). When agricultural workers in Zimbabwe learned about HIV/AIDS through peer education and workshops, they became more open in discussions about HIV, indicating reduced stigma (Kerry and Margie, 1996). Research on care, stigma, and discrimination against PLHA can also serve as an effective means to creating dialogue about stigma. In India, discussions with staff from three hospitals on the results of baseline research on stigma towards PLHA led to increased interest and action to reduce stigma, including the development of PLHA-friendly “gold standards” for hospital programs and staff (Horizons, 2002b). Mass Media: Mass media, if inappropriately used, can actually increase stigma. For instance, if vulnerable groups such as sex workers are portrayed as the main HIV transmitters, they will be further stigmatized. Conversely, mass media can help to foster a more supportive environment regarding HIV/AIDS prevention and PLHA. Mass media channels, when viewed as credible sources of information, have the advantage of reaching vast audiences. Effective messages delivered through mass media channels can support and reinforce interventions

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conducted at the community level. For example, in India a documentary film describing the life of a PLHA was produced and broadcast nationally (Venkataraman et al., 1996). Focus group discussions revealed that exposure to the film increased acceptance and reduced stigma, and volunteers and organizations became more willing to work with PLHA. Training: To foster healthier, more positive attitudes about PLHA, training interventions are needed for a variety of important and influential audiences including health care workers and other caregivers, opinion leaders, media workers, and journalists. For example, UNAIDS worked with the Rotary Club of Dhaka, Bangladesh, to organize a workshop on HIV/AIDS for media professionals (Rotary International, 2002). Training efforts must go beyond knowledge. Training should address the attitudes, interpersonal communication, and counseling skills of health workers and caregivers. Historically, training for health workers has focused on HIV/AIDS knowledge and specific technical skills, with less emphasis on the importance of positive provider attitudes. Even in the UK, research found that an alarming 46 percent of PLHA surveyed reported discrimination from health care providers (Power et al., 2002). As regards frontline providers of information and care to people concerned about HIV/AIDS, providers’ judgmental attitudes can inhibit people from asking questions and seeking service, and can reinforce stigmatizing behavior in general. In Cambodia, training teams visited caregivers, demonstrating treatments involving close contact and touch, and reinforced the message that PLHA do not need to be feared (Sarath, 1999). In Uganda, the Islamic Medical Association trained over 8,000 religious leaders. An evaluation concluded that the support of official Islam for care of PLHA is a strong counterweight to stigmatization (UNAIDS, 1998a). Involving PLHA: The involvement of PLHA in designing communication and training interventions is paramount. PLHA can give the disease and its consequences a human face, increasing the immediacy of the illness to others. PLHA involvement allows PLHA to redefine their illness, reconstruct their identities, and develop tools to reduce stigma. For example, The AIDS Support Organization (TASO) in Uganda provides counseling and medical care to PLHA and their families and organizes groups where they can discuss issues they are facing (Kaleeba et al., 1997). Participants report that the program helps them realize that they are not alone. Those PLHA who are affiliated have high rates of disclosure of their HIV status, indicating reduced stigma. A multi-country study of PLHA involvement in communitybased organizations (in Burkina Faso, India, Ecuador, and Zambia) showed similar results; PLHA demonstrated reduced fear of stigmatization and feelings of powerlessness (Horizons, 2002a).

Key Issues to Communicate l l l

Emphasize that everyone is at risk, not just those identified as vulnerable groups. Focus on risk behavior, not risk groups. Provide indepth information on all aspects of HIV and AIDS (e.g., how HIV is transmitted, the difference between HIV and AIDS) (Nyblade, 2003).

106 Strategic Communication in the HIV/AIDS Epidemic l l l l l

Create awareness on stigma (i.e., language, attitudes, behavior) and how it is harmful (Nyblade, 2003). Invite NGOs and health workers involved in HIV/AIDS work to examine their own attitudes and behavior (Nyblade, 2003). Include asymptomatic PLHA in prevention efforts and visual communication to demonstrate that “You can’t tell by looking.” Communicate that PLHA can lead long, positive, and healthy lives if they have a number of care and support options. Emphasize human rights and compassion such as: – – – – –

“I am not my disease.” “My friend with AIDS is first my friend.” “AIDS does not discriminate, why do you?” “Fight AIDS, not people with AIDS.” “Take a look, stigma kills.”

Challenges and Lessons Learned The lack of in-depth knowledge and dialogue on HIV and AIDS allows “correct knowledge” to coexist with irrational fear of casual transmission and stigmatizing attitudes (ICRW Research Update, 2002). Attitudes toward certain groups such as sex workers, IDUs, and MSM may be deep-rooted and difficult to change. Stigma is difficult to measure as it is fed by a range of prejudices, attitudes, and behaviors (UNAIDS, 2000b). Reducing stigma may mean talking openly and frankly about sexuality and what communities sometimes define as socially unacceptable behavior. Until recently, relatively few interventions to reduce HIV/AIDS stigma in developing countries had been conducted, rigorously evaluated, and published (Brown et al., 2001a). However, a growing number of countries are now focusing directly on stigma. Lessons learned, to date, include the following: l l l l

l

No one strategy can effectively eliminate stigma—a combination of approaches is crucial. Stigma messages need to be integrated into the overall behavior change strategy. All HIV/AIDS messages need to be carefully formulated so as not to reinforce stigma. Few national-level stigma interventions have been conducted. Greater emphasis needs to be placed on comprehensive programs that use the context of prevention, care, and support to address stigma. Indirect, as well as direct ways to address stigma can work well (Busza, 1999). Personalizing or putting a face on the disease makes the greatest impact on stigma.

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Case Study: Brief Examples of Disclosure and Compassion in Africa One of the strongest strategies to address stigma around HIV and AIDS is to humanize the face of AIDS through public testimonies of PLHA. The following projects used mass media to tell stories of the courage and strength required when confronting HIV infection and living openly with HIV and AIDS.

South Africa: “The Living Openly” Project AIDS is seldom associated with openness but this project has given insight into the lives of PLHA who chose to help “normalize” the disease through public disclosures of their status. The project was born in 1999, reflecting on the often harsh and stereotyped portrayals of PLHA in the South African media, which used pictures of people who were ill, in bed, emaciated, and downcast. Instead, the Beyond Awareness Campaign of the Ministry of Health developed a photographic exhibition, a book, and a documentary video, tracing the uniquely different experiences of 31 South Africans who tell their stories about the process of living openly with HIV and AIDS. The participants were drawn from a variety of contexts and represent a wide age range: from 11-year-old Nkosi Johnson to Jan de Groot who was 73 years old. A qualitative evaluation of the intervention showed that it had valuable psychosocial benefits for the PLHA participants in that it gave them useful information and made them feel empowered. The public response, especially to the photo exhibition, demonstrated that people identified with the project participants and felt that their stereotypes about PLHA had been challenged. The video has been shown on prime-time TV. However, the evaluation was not able to capture the impact of this broader exposure (Beyond Awareness Campaign, 2000a and 2000b).

West Africa: “Living Positively—Vivre Positivement” The West African Santé Familiale et Prévention du Sida (SFPS) program developed a similar video in 2002. This 42-minute video, produced by Burkina Faso filmmaker Fanta Nacro, presents the testimonies of West African PLHA who describe their need to love and be loved, their desire to have children, and how they were eventually accepted by their families and communities. Additionally, a 32-page color comic book, “Marcelline et Jojo: Un combat pour la vie” tells the story of Jojo—a young student who has just learned about his HIV-positive status. Through Jojo’s trials and tribulations the reader learns about nutrition, the treatment of opportunistic infections, and the need to join a support group. The South African Storyteller Group helped develop the comic, which was modeled after an earlier version called “Eating with Hope.”

108 Strategic Communication in the HIV/AIDS Epidemic

Plate 3-5: A Comic Book, Marcelline and Jojo rancophone A frica promotes open discussion and Jojo,, for F Francophone Africa support for PLHA. (Credit: Projet Regional Sante Familiale et Prevention du SIDA)

Both the objectives and content of the comic book and film were developed through a participatory workshop that brought together PLHA and their organizations, health providers, program managers, cartoonists, and filmmakers from Burkina Faso, the Ivory Coast, Mali, Senegal, and Togo. Both products are a result of the collaboration between SFPS, Johns Hopkins’ CCP, UNAIDS and RAP+, the Francophone Association of People Living with HIV and AIDS (JHU/CCP 2002a).

Ghana: Reach Out, Show Compassion Stop AIDS, Love Life is a joint effort of the Ghana Ministries of Information and Health, the Ghana Social Marketing Foundation, and JHU/CCP, with support from USAID. In 2000, the program created radio and TV spots featuring one of the first Ghanaians, Kuasi, who disclosed his HIV-positive status in public. Kuasi died shortly after the production of the TV spots and his father and aunt agreed to talk on camera about his courage and their compassion for him. The family’s openness led to greater political commitment to reduce stigma in Ghana. The second phase of the Stop AIDS, Love Life national communication program is called Reach Out, Show Compassion. One of the key barriers for community and faith-based organizations to get involved in AIDS activities is the stigma that HIV and AIDS are associated

Communication for Change 109

with immorality. Many even deny that people amongst them may be infected. Compassion is a key to de-stigmatization and one of the central tenets of humanitarian and faith-based groups. The campaign’s goal is therefore to cultivate attitudes of compassion, hope, and support among Christian and Muslim leaders toward Ghanaians living with HIV/AIDS. Using (i) advocacy activities with the church hierarchy, (ii) training and activity packages for clergy, imams and lay leaders, and (iii) mass media to approach congregations, the program is already increasing the number of faith-based religious groups engaged in HIV/AIDS issues. Training programs for 900 clergy, imams, and other religious leaders were held throughout Ghana. Television and radio spots were produced and aired, featuring openly positive PLHA as part of their congregation or preachers quoting passages from the Bible or Koran where compassionate behavior is demonstrated. A multitude of print materials, such as posters, brochures, stickers, billboards, and T-shirts support the campaign. People living with HIV/AIDS need more than medical support; they need emotional and spiritual support and they need to live in caring communities. This will slow the spread of HIV because people would not be so likely to hide their status if they could expect more compassion. Sources: Beyond Awareness Campaign, 2000a, 2000b; JHU/CCP, 2002b; Tweedie et al., 2002

Chapter 4

R eaching Special Audiences Preventing HIV Infection in Young People Rationale The previous chapter contained many references to and examples of young people because they represent a large percentage of the general population in the developing world. However, they also represent a special audience with special needs when it comes to program formulation and design. Young people present the greatest hope, yet the largest challenge, in curbing the HIV/AIDS pandemic. If all young people were to reach their 25th birthday free of HIV and AIDS, the number of PLHA would be halved. Unfortunately, because of their social, emotional, and physical immaturity, and because societies often make it difficult for them to learn about sexuality and HIV/AIDS, young people are especially vulnerable. There are a number of overlapping and confusing terms used for young people. A “child” is defined by the UN Convention on the Rights of the Child as anyone below 18 years of age. “Youth” is a term sometimes used to denote “young people,” but it has different connotations in various countries, including organizational membership in youth associations and youth wings of political parties for up to 35 or 40 years of age. “Adolescence” usually means people between 10 and 19 years of age, and “teenagers” refers to those between 13 and 19 years. For the purposes of this discussion, we use the term “young people,” which is defined as people between the ages of 10 and 24 years of age and includes “early adolescence” (10 to 14 years), middle adolescence (15 to 19 years), and young adults (20 to 24 years) (JamesTraore, 2001). The majority of research and programming has concentrated on the 15 to 24year age range. However, in order for young people to develop healthy behaviors that protect them against HIV and AIDS, programs need to address early adolescent and even preadolescent age groups. Most young people around the world become sexually active between the ages of 10 and 20 years (Greene et al., 2002). Of the estimated 40 million people living with HIV or AIDS at the end of 2001, approximately 11.8 million were between 15 and 24 years of age. About half of all new infections occur in young people between the ages of 15 and 24 years, amounting to 6,000 young people being infected per day around the world (UNAIDS, 2002a). As young people reach puberty, they are caught between two worlds—childhood and adulthood. Adolescence is a time of change and adjustment. At this time, girls and boys learn to

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Plate 4-1: “Not everyone is doing it…. If your time hasn’t come, don’t have sex,” reads an HIV/AIDS poster for young people in Honduras. (Credit: Nicaragua Comision Interagencial de Salud Reproductiva)

behave as adults and to deal with new physical sensations and emotions. Hormonal changes cause swings in emotions, confusion, and strong sexual urges. Often young people want to experience sex and the feeling of being loved by someone without considering the risks involved. They are sexually, emotionally, and socially inexperienced, and are often denied the information, guidance, skills, and services they need to protect themselves. Young people often do not believe that they are vulnerable to HIV and other threats to their health and survival. They more readily put themselves at risk of contracting HIV than do adults (UNAIDS, 1999b). Although many know about HIV and how to prevent it, and may even think their friends are at risk, they often believe that they, themselves, are unlikely to be infected (Maswanya et al., 1999). Young people often define the trustworthiness of a prospective partner by the opinions of family and friends and his or her ability to fulfill emotional and physical needs, rather than trying to learn about a partner’s sexual history. The very nature of adolescent relationships increases their risk of HIV infection. In some countries, young people may enter a series of short-term sexual relationships. Because they are faithful to their current partners, they do not consider themselves at risk of HIV infection and rarely use condoms. They assume that partners are HIV-negative until suspected otherwise and when trust within the partnership is broken, they often terminate the relationship and look for another intimate partner immediately, rather than adopting risk-reducing methods such as using condoms (Longfield et al., 2002) or abstaining. In surveyed countries in Africa, the percentage of unmarried girls between 15 and 19 years of age, who used condoms

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during their most recent sexual encounter ranged from 2 percent to 18 percent. Reasons for non-use of condoms included poor access, expense, and personal barriers such as shyness about buying condoms and difficulty discussing use with partners (Kiragu, 2001). On the other hand, others believe there is nothing they can do to prevent infection and are powerless and fatalistic about HIV. Unfortunately, it is often difficult for adults to communicate with and influence young people who are exploring their own independence. Peers’ opinions and actions usually carry more weight in influencing young people’s behavior than those of their parents and elders in the community. Their friends become important sources of acceptance and self-esteem and such peer pressure propels young people into risk-taking behavior such as unprotected sex, alcohol, and drug use, as well as violence. Young people are also heavily influenced by advertising and media images that typically idealize sexuality—often without protection. The risk of infection is compounded by poverty, lack of education, and unemployment, especially for young women because of their low status in society. Demographic and health survey data indicate that girls who complete some secondary education are more likely than those who do not, to delay the onset of sex and to use contraceptive methods, including condoms. Yet, in most parts of the developing world, few women attend secondary school. In poor communities, many young women enter sexual relationships with older men (who are more likely to be HIV-positive) in exchange for gifts, school marks or fees, clothing or food, or other transactions they believe will increase their status among peers (Luke and Kurz, 2002; PRB, 2001). In sexual relationships of this sort, young women have little power to demand condom use. In some countries in Africa, many young women have two types of boyfriends—those who can help support their material needs and those with whom they are emotionally or romantically involved.

Formative Research The formative research questions for a program for young people include the following: l l l l

l l

What channels of communication do different categories of young people access most? What media or channels would influence them most on sexual and reproductive health matters? How do parents, family, and community relate to young people on such matters? What are the opinions of community gatekeepers on these matters? What has been the experience with sex education or family life education in the school system? What level of investment over what period of time would be required to make this effective? What are the attitudes of health providers on delivering STI services, VCT, sexuality and pregnancy counseling, and related services to young, unmarried people? What other community-based channels such as youth associations and clubs could be tapped to link with other communication strategies?

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Strategic Approaches Young people constitute a diverse audience that can be segmented in a number of ways: l l l l l l l l

age marital status education and present schooling status socio-economic status ethnic/cultural background urban or rural residence sexual activity—active and inactive sexual preference

The strategic approach that will work best depends on the audience segment a program intends to reach. Each of these audience segments will require different approaches and channels. Programs for young people are most effective when they employ a tiered approach, reaching more than one segment, each with its own tailored strategy. Strategic communication approaches for young people include: Entertainment–Education: Music and music videos, educational videos, sports, television and radio programs, and community-based entertainment channels are particularly popular with young people. They make excellent vehicles for HIV/AIDS prevention programs through use of drama, public service announcements, variety shows, and quiz and game shows. Throughout the world, young people are the largest consumers of such entertainment formats. Many programs have tapped into this popularity to reach young people with HIV/AIDS information and motivation to adopt healthy behaviors and avoid risk. Entertainment– Education can also be used to direct young people to services. For example, a long-running radio program for young people in Kampala, Uganda, is responsible for growing numbers of clients attending the Naguru Teenage Centre for RH services and VCT testing (Juma et al., 2001) (See Chapter 6 for a more complete discussion of Entertainment–Education techniques). Youth Newspapers, Magazines, and R adio Magazines: In many countries, the HIV/AIDS Radio pandemic has led to the production and distribution of special newspapers or magazines aimed at young people. For example, Straight Talk, a Ugandan organization for young people, produces monthly newsletters and weekly radio programs on safer sex, reproductive health issues, and life skills education. Newsletters are distributed to thousands of primary and secondary schools in the country, and these enjoy a wide readership among young people and their teachers. Thousands of young people have now formed Straight Talk clubs where they discuss issues in the newsletters and listen to the radio programs together. In Tanzania, a commercial magazine called Femina addresses reproductive health issues through a mixture of articles, some on general interest issues and news, and youth-focused advertising. The idea is to attract young readers to consider issues and protection from HIV through a vehicle that they would love to read for entertainment purposes.

114 Strategic Communication in the HIV/AIDS Epidemic Box 4-1: Examples for Entertainment–Education Ghana: “Speak Easy” Youth Radio: The award-winning youth radio magazine show, “Speak Easy,”— aired weekly in 1999 on the most popular FM station in Accra. Developed by Ghana Social Marketing Foundation and Johns Hopkins’ CCP, the one-hour show combined a serial radio drama with a live discussion by a youth audience in the studio. A call-in line motivated participation directly from the listening audience. A major objective was to open dialogue and discussion among youth on reproductive health issues, especially HIV and AIDS. Themes such as parent–child communication and peer pressure were most popular among young people. Many callers expressed the desire that the drama be made into a TV show, which was done the following year. Launched in 2001, “Things We Do for Love” is a TV serial drama in Ghana for young people that addresses the pressures and problems of adolescence (e.g., HIV and AIDS, teen pregnancy, condom use, and rape). After every six episodes, a discussion segment with a live audience allows viewers to ask questions and make contributions.

Hotlines and Computer Counseling: In a number of places, organizations have established telephone hotlines or “helplines” with telephone counselors who have been trained to talk to young people about sex and reproductive health topics. Computerized counseling systems allow young people to explore the issues using a completely anonymous question–answer system. However, such systems are less immediate and personal than live counselors and cannot deal well with young people in crisis situations. Peer Education: Many strategies involve training and supervising peer educators. These young people are trained to discuss sexual and reproductive health topics with their peers, including advocacy for safer and more responsible sexual behavior. Most young people trust trained peer educators because they feel such counselors have greater empathy and can “speak their own language.” Life Skills Approaches In and Out of School: Schools are an ideal place to reach large numbers of young people with reproductive health education, whether during school hours or through school clubs as extracurricular or community-based activities. Such programs should begin as early as possible in primary school before children have begun to drop out. In many countries, ministries of education have integrated family life education or life skills education into primary and secondary school curricula. In recent years, the life skills approach has become more popular because of teachers’ and parents’ resistance to teaching curricula labeled “sex,” “family life,” or “reproductive health” education (UNICEF-UNAIDS-WHO, 2001). Life skills are described in various ways but one definition involves the classification in Figure 4-1. Such approaches require pre-service or in-service training for teachers on both the content and methodology, which must be interactive and participatory rather than informational and didactic. In other words, teachers must become interactive communicators. It is not easy to transform a traditional teacher into a life skills facilitator. To be most effective, life skills training should involve the students’ parents and community so that skills introduced in the classroom are supported and reinforced at home (Carnegie and Weisen, 2000; Horizons, 2001a; UNICEF, 2002a; USAID, 2002b).

Reaching Special Audiences 115 Figure 4-1: Model Illustrating the Interdependence of Life Skills

Source: Carnegie and Birrell Weisen, 2000

Life skills approaches can also be delivered through youth clubs, either with adult facilitators or through peer education. Life skills approaches can also be the basis of the design of media initiatives that rely on a synergistic combination of mass media and group processes at the community level (see Bangladesh ARH case study and case study on Sara Communication Initiative). Parent–Child Communication: Research in the United States has shown that children who maintain good relationships and communicate freely with their parents are less likely to engage in high-risk practices such as alcohol abuse, drug use, and early sex. Some programs in developing countries are beginning to work with parents to encourage them to take responsibility for educating their adolescents about sex and reproductive health in an effective, sympathetic manner. For example, the Delivery of Improved Services for Health project in Uganda developed a newsletter and radio programs for parents about how to discuss sexual and reproductive health issues with their children, and it directed parents to church groups that had parent education classes (Lewicky et al., 1998; Palmer, 2002). However, in many cultures, usually older siblings, aunts, and uncles, rather than parents, educate children on sexual issues. Programmers should be guided by formative research on this matter to find the right mentor for such education. In addition to communication channels and methods, there are a number of systems interventions that should be well-linked to strategic communication interventions.

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Adolescent-friendly Services: Whenever possible, communication programs should be linked to adolescent-friendly health and social services. There are different models of adolescentfriendly health services: stand-alone youth clinics, separate services and spaces for young people within regular health facilities that are offered at any time, or regular reproductive health services offered to young people on specific days of the week or hours of the day. Often these health services attract young people with recreational activities, indoor games, or video shows. Health workers receive training to provide information and services that are relevant to young people in a friendly manner without judgment or condemnation. In many countries, family planning associations are establishing adolescent-friendly services by training their service providers or hiring younger nurses and midwives. Clinics offer contraception including condoms, antenatal care services, STI treatment, VCT, and overall sexual and reproductive health counseling, including abortion and post-abortion counseling where legal. Youth Clubs and Centers: A number of community-based programs have established youth clubs or drop-in centers where young people can meet and interact. These places are considered to be relatively safe and supportive environments. Usually, such centers attract clientele with indoor and outdoor games, video shows, and other activities. The theory behind such centers is that they provide activities that are socially stimulating. They foster the development of positive relationships with peers, but recreational time is supervised, thus reducing the chances of casual and unsafe sex, as well as other risk behaviors, such as smoking, alcohol consumption, and substance abuse. Often such centers also organize training in life skills and livelihood skills. Some provide condoms or other reproductive health services. In Malawi, Africare has worked with communities in several districts to establish drop-in centers. Young people who use the centers have established clubs and drama groups that entertain and educate the surrounding communities on a variety of health issues, including HIV/AIDS prevention. Sometimes schools or communities start anti-AIDS clubs as extracurricular activities such as Sara life skills clubs (see Sara case study) or Straight Talk clubs in Uganda. A countrywide association such as Boy or Girl Scouts or Guides may take the lead. Income Generation and V ocational Skills T raining: A number of programs for young Vocational Training: people involve training in vocational skills or establishing income generation activities. In theory, these activities reduce the likelihood that young women will have transactional sex. Also, earning a living and being employed helps build self-esteem and greater confidence to resist peer pressure to engage in risky practices. Such activities do not constitute a communication approach per se, but may be incorporated in some of the approaches mentioned here.

Key Issues to Communicate The following are some key objectives that communication programs for young people may seek to achieve:

Reaching Special Audiences 117 l l l l l l l l l l l l l

Motivate young people to delay sexual debut as long as possible by resisting peer pressure or other influences to begin sexual activity early. Educate youngsters that loss of virginity does not mean it is impossible to abstain again. Encourage young people to abstain from multiple sexual relationships. Make condom use valued and expected in any sexual relationship. Increase the perception of their personal risk of HIV/AIDS and the ability to talk to others about sexual issues. Build the confidence of parents (or other trusted adults) and children to discuss sexual issues with one another. Encourage young people to make personal risk-reduction plans and to stick to them. Facilitate life skill competencies and communicate using role models that demonstrate these. Educate young people that HIV can infect anyone and that one cannot tell who is infected by the way they look. Encourage young people to continue schooling as long as possible. Inform them that STIs facilitate the transmission of HIV. Encourage young people to access friendly health services, including STI counseling and treatment, VCT, and condoms. Encourage young people to access friendly social and recreation services and to partake in sports.

Challenges and Lessons Learned Segmentation: Young people are not a homogeneous group. It is impossible to find one effective medium to reach all, even in a particular culture. Their differences can be determined by age, rate of physical and emotional development, levels of literacy, and relationship to family, peers, and mentors, among others. Their ambitions and other motivations also differ greatly, so it is impossible to address all young people with the same strategic approach. Mass Media: Mass media can play a critical role in BCC programs for young people. Around the world, access to radio, television, films, and videos is growing rapidly. Most surveys of TV/video viewership indicate that 15 to 20-year-olds watch these in the greatest numbers. These media are very influential. For example, young people across the African continent watch the videos of various rap musicians and, subsequently, emulate their behaviors and dress. Such media can be harnessed for positive social change and may be the single best and most economical way to influence large numbers of young people. On the other hand, more and more young people are exposed to a brand of international youth culture in the form of music, with explicit sexual lyrics, and music videos that often suggest that casual sexual activity is a worldwide norm. With satellite television, cables, and dishes, it has become more difficult to segment young audiences for different programs and messages. When condom promotion is designed to reach those already sexually active, often through a popular youth personality or star, those who are not yet sexually active may

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receive the message that premarital sex is the social norm for those who are “cool.” This fact requires youth programmers to rethink their program formats and messages to ensure that they deliver prevention (e.g., “ABC”) messages in a balanced way. This is possible to do, as has been shown in the Zambian case study at the end of Chapter 3. Questions About Negative Effects: As noted, some fear that educating young people on sexual issues, even in a balanced way, will have negative outcomes. However, it has been shown that properly designed reproductive health education programs do not lead young people to have casual sex. Magnani and Karim (2002) identified 41 studies of such programs around the world. They found that more than half of these programs were school-based, though others were community-based or worked through the mass media, workplace, or health facilities. Almost all resulted in improved knowledge and attitudes, and many produced an increase in contraceptive use. Fewer programs had a demonstrable impact on either sexual initiation or number of sexual partners. For each of these two outcomes, only seven programs showed a significant impact. However, the researchers found that where there were results, they were always in the direction of reduced sexual risk-taking. Children will receive sex education from one source or another. They are bombarded by negative adult behavior models through cinema, television, and advertisements, and “silence and evasiveness are just as powerful teachers as discussion of the facts” (McNab, 1981). Going to Scale with P eer Education and Life Skills: Face-to-face interventions such as Peer peer education programs (see Chapter 6) and life skills programs are potentially effective among those reached, but they are costly and difficult to develop, manage, and maintain at a large scale. With HIV/AIDS prevalence reaching the magnitude it has in many regions, interventions need to be scaled up. Achieving high quality face-to-face interventions at a large scale requires tremendous human and financial resources that normally are beyond the means of any individual program. Small-scale efforts that are not sustained or integrated into the system risk having little or no effect (Kinsman et al., 1999). School-based programs have strong potential. When teachers are trained and used as role models, they can effectively reach large numbers of young people. They can also serve as effective catalysts for change. However, teachers who engage in risky sexual behavior with their students put programs in jeopardy. Such teachers can no longer be viewed as credible authorities, nor can they command the respect of their students and the communities they serve. Participation of Y oung P eople: Programs should focus on the participation of young people Young People: in design and implementation. Young people usually understand what their needs are and how they should be addressed. They can motivate their peers more effectively than anyone else. By knowing what will have optimal impact, youth-led NGOs can catalyze young people in all areas, personally and programmatically. Young people can also advocate for youthcentered programs in government and other institutions. In order to make such programs even more successful, young people need to strengthen their skills in management, budgeting, finance, and report writing. Young people are generally eager to learn such things. Youth-led efforts can translate into better youth-focused programing in both NGO and government channels and should be promoted (Golombek, 2002).

Reaching Special Audiences 119 Box 4-2: Elements of Successful Sexuality Education P rograms Programs Content l l l l

Give clear, consistent messages based on accurate information. Focus on reducing sexual behaviors that lead to unintended pregnancies and STIs/HIV. Be specific to age and culture. Have a theoretical framework proven to affect behavior.

Program Design l l l

Include methods that involve students, are skill-based, and address social pressures. Conduct sessions that are of sufficient length. Motivate and train teachers to participate.

Source: Adapted from Kirby, 2001

Youth-F riendly Health Services: The need for youth-friendly services is evident. However, outh-Friendly currently, these services are not widely available and more advocacy is needed for them. Programs require special emphasis to ensure they have clear and consistent messages and that there are relevant links to referral services, where appropriate. Rural areas are often hard to reach, but with a combination of personnel trained in providing youth-friendly health services, quality materials, and effective use of the mass media, young people will have access to the information and services they need to reduce their risk of HIV infection. Faith-Based Initiatives: In many countries, churches or other faith-based institutions serve as a meeting place for young people. Faith-based leaders and organizations need to be involved as much as possible. Providing religious leaders with statistics and case examples can be useful in convincing them of the need for sexual and reproductive health education and that such information does not lead to promiscuity, as noted. Faith-based groups can incorporate messages about risk reduction into the work of youth groups. It has been demonstrated that adolescents who have spiritual beliefs are less likely to initiate early sexual intercourse (WHO, 2001). In Uganda, adolescent girls have used their chosen label of being “born again” as protection from undesired male advances (Wimberley, 1994). Involving PLHA: PLHA can play a critical role in protecting the lives of young people. It is important for young people to appreciate that the risk of HIV infection is real. It has been documented that young people who are involved in providing care and support for PLHA are less likely to engage in risky behavior and less likely to stigmatize PLHA (Horizons, 2001a). R ole Models and Mentors: Young people need adults to model good behavior and to talk to them about values, relationships, and sexuality. They need adults with whom they can talk: people who are knowledgeable and confident and able to answer questions. These adults should see the potential in young people, not just the problems. We can find such adults in many places—at school, at church, in the workplace, at home, and in their extended family. These adults strive to understand young people and the realities they live in, and not preach to them. They should see young people as the hope for the future with great potential.

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Capacity-building of Y oung P eople: In the process of developing and implementing programs Young People: for young people, their capacity should be built through involvement in programs. They can develop skills in areas such as strategic thinking, management, planning, budgeting, and financial accountability. With such skills, they can further develop in many areas. Those involved in peer education gain specific skills in communication, knowledge in sexual and reproductive health, as well as overall adolescent health and development. When these young people move on to other occupations, they carry these skills and this knowledge with them. Adult members of the communities that support programs for young people also gain personally. Parents, teachers, religious leaders, and service providers gain skills in communication, as well as critical knowledge that they can use to reduce their own risk of HIV infection. Many of these adults become role models for young people and they can continue these informal relationships throughout their lives. Linkage to Y outh Livelihood: The needs of young people are diverse. Often what appears to Youth be a health problem is rooted in something deeper. While many young people are motivated to participate in programs and adopt healthier behaviors, they may be prevented from doing so because of economic or social factors. For example, a young person may want to be a volunteer peer educator, but may have family pressure to bring in an income. Young people often face strong social pressure: for boys the pressure to appear to “be a man” and for girls the pressure to be seen as “trendy” and to have nice things such as cosmetics, clothes, or a cell phone. Some just cannot see that life holds anything more for them than these immediate pleasures that are available in exchange for sex. Others, even more desperate, are forced to engage in risky sexual behavior for their own and their families’ survival. Linkage with livelihood programs can take place in different ways. For instance, health communicators and educators can deliver HIV/AIDS education to livelihood programs or act as counselors and referral points for AIDS-affected youth. It is not necessary or desirable for every organization to become involved in livelihood skills development, for this requires special expertise (In Focus, 2001). 4-3: T ips for Success in W orking with Y oung P eople Tips Working Young People l l l

l l

Start programs with as young an age group as possible, phasing in issues in an age-appropriate and culturally acceptable manner. Know the percentage of young people who have early sexual activity and the extent of their knowledge on sexuality, sexual and reproductive health, SRH, and HIV/AIDS. Segment your audience, be clear about the communication objectives for each segment, and where best to reach them. A well-designed, balanced approach to prevention messaging (e.g., the prevention “ABCs”) is required. Programs need to promote condom use in a targeted way to those who are sexually active. Involve young people in all aspects of the program from planning, through implementation, monitoring, and evaluation. Involve young people more deeply in accurately assessing their own personal risk of HIV infection. Message-based approaches are very limited. Behavior change is much easier to bring about when people make their own decisions, based on their own analysis. Skill-based approaches reinforce such development. (Box 4-3 contd.)

Reaching Special Audiences 121 (Box 4-3 contd.) l l l l l l

Strengthen peer group systems by age and gender. Involve parents and community gatekeepers in the process as early as possible. Involve media, religious, educational, and health service gatekeepers in the process, at an appropriate stage. Integrate issues of gender equity and de-stigmatization into prevention and care programs for young people. Ensure that prevention messages are linked to accessible services, including counseling, information, and health services. Advocate for more and better services for young people. Create better opportunities to reach young people through diverse channels: schools, clinics, churches, youth centers, and the mass media.

Case Study: Communication for Social Norm Change in Adolescent Reproductive Health in Bangladesh Background: In 1999, a coalition of partners called the “Adolescent Reproductive Health Working Group,” with technical support from Focus on Young Adults, the Bangladesh Center for Communication Programs and Johns Hopkins’ CCP, began an innovative communication program, funded by USAID and, more recently, UNICEF. Adolescents from ages 10 to 19 years constitute 25 percent of the population of Bangladesh’s 130 million people. In Bangladesh, society gives little recognition to the fact that adolescence is a unique period of life. Neither the public health nor the education system fully address adolescents’ problems, such as early marriage, early pregnancy; maternal morbidity, mortality, and malnutrition; STI/HIV transmission; and, increasingly, sexual abuse and substance use. Most adolescents face anxiety and mental stress from the time of changes in puberty because such subjects are normally taboo, even between parent and child. This program illustrates a holistic approach to keeping HIV infection low in a very low prevalence country. The rate of infection among IDUs is 4 percent, while among FSWs it remains less than 0.5 percent, and HIV is not measurable in the general population, but there is growing evidence of increasing STI rates and other reproductive health problems among adolescents. Audiences and Strategy: Following a detailed baseline study, the project team designed and implemented a comprehensive communication package consisting of question–answer booklets based on what adolescents said they wanted to know. The four booklets cover (i) physical and emotional changes in puberty, (ii) sexual attraction, delay, and conception, (iii) preventing risks such as teenage pregnancy, early marriage, and STIs/HIV, and (iv) marriage and family health. Accompanying the booklets are a set of entertaining videos that were produced through participatory, life skills workshops with adolescents. The videos reflect the adolescents’ own thoughts, feelings, and solutions to their problems, as well as comments from parents and

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service providers. Comic animation and songs by teenagers on the themes make the videos lively and engaging. A third part of the package is life skills manuals that guide facilitators through participatory processes with adolescents. The programmatic tools are branded as the “Know Yourself” communication toolkit and are tied to radio and television magazine shows and a comic book series. Adolescent producers and spokespersons produce the TV and radio components that show adolescents searching for and finding solutions to their problems through field interviews, success stories, drama, song and video/audio clips, and panel discussions with experts. A comic book series is also being produced with a great deal of adolescent input through story-writing workshops and formative research. Comic books serve as an alternative media for communicating sensitive issues in an entertaining and culturally acceptable way. The unique feature of this well-researched communication package is that various government, NGO, and UN partners have adopted it as a common toolkit for social mobilization on adolescent reproductive health issues. The strategy recognizes that adolescents need information, need to be motivated to act, and require psychosocial skills, such as critical thinking and negotiation, to develop positive behavioral outcomes. They also need an enabling environment to foster and sustain positive change. Likewise, those parents and community members become a part of the enabling environment. The Working Group decided that rather than wait for policy change and the establishment of services, it would follow a demand-driven approach through strategic communication, thereby gradually influencing social norms concerning adolescent reproductive health, as well as policy on health and educational service delivery. Source: Health Communication Partnership, 2003d

Focusing on Gender: Reaching Women and Girls, Men and Boys Rationale Of the estimated 40 million people living with HIV/AIDS at the end of 2001, men and women accounted for 18.5 million each, while 3 million children were infected (UNAIDS, 2002a). However, in sub-Saharan Africa, there were an estimated 15 million women compared to 11 million men living with the disease. Why are there such differences and how does gender relate to acquiring HIV? One of the fundamental causes of HIV/AIDS is gender inequity, especially within contexts of poverty and income disparity (Long and Ankrah, 1996; SIDA, 1998). In most countries where the HIV/AIDS epidemic rages, women and girls are especially vulnerable. As of December 2001, among 15 to 24-year-olds in sub-Saharan Africa, twice as many females (5.7 million) as males (2.8 million) were living with HIV/AIDS (UNAIDS, 2001a). In Eastern and Southern Africa, young women between 15 to 24 years of age are up to six times

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Plate 4-2: Comic book series on Adolescent R eproductive Health in Bangladesh dealing with HIV/AIDS Reproductive and many related subjects. (Credit: AV Com/BCCP)

more likely to be infected than adolescent males of the same age group (UNAIDS, 2000d). In general, females are infected in their teens and early twenties, whereas males reach similar levels in their mid-twenties to mid-thirties. One reason given for earlier infection in females is that the female reproductive tract is more vulnerable to HIV than that of males (Watstein and Laurich, 1991), so it is easier for men to infect women than vice versa. Second, in parts of sub-Saharan Africa and Asia, teenage girls usually have sex with or marry older males, rather than their own age mates. Third, gender disparity exists in many parts of the developing world in terms of access to education (especially retention in higher-level education), health, and other social service facilities. But above all, girls and women in these regions are much more vulnerable to HIV due to socio-cultural conditioning beginning at an early age. In many parts of Africa and Asia, girls have fewer opportunities than do boys in almost all endeavors. Traditionally, their primary role is seen to be future child-bearers and nurturers. At an early age, girls often learn to take subservient roles and, as they grow older, they lack basic psychosocial skills such as the ability to communicate assertively, to think critically and creatively, to make decisions and negotiate, to solve problems in social relationships, to resist pressure, and to cope with emotions and conflict (Carnegie and Weisen, 2000). The gender-based socialization of boys and girls continues to create power dynamics in sexual relationships that put women at a disadvantage (Population Council, 2001). Girls

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usually enter relationships with the opposite sex as unequal partners. As such, they are often unable to negotiate safe sex or to avoid sexual abuse and exploitation. They also have less access to condoms, even if they are available, and are therefore likely to leave decisions about their use to their male partners. Girls in Africa, looking for ways out of poverty, or more precisely, a means of paying their school fees, acquiring clothes, jewelry and makeup, or to travel, are often courted by older men or “sugar daddies” who give such gifts in exchange for sex. Such “transactional sex” is very common in many countries and is a prime reason for the spread of HIV to young women. In parts of Africa and Asia, some men falsely believe that having sex with a virgin or younger “clean” girl can act as a cure for HIV/AIDS. Many young girls have been infected as a result of such misinformed and desperate searches for a cure. Globally, violence against women is an important factor in HIV transmission (WHO, 2000a), including physical violence from intimate partners and harmful traditional practices such as female genital cutting (Morison et al., 2001), forced or coercive sex, forced prostitution, and trafficking. In a study in India, for example, men who had experienced extramarital sex were 6.2 times more likely to abuse their wives than men who were faithful (Martin et al., 1999). In a sample of 122 young men in South Africa, 19 reported having participated in gang rape. In South Asia, deep-rooted gender discrimination, lack of female education, poverty, and lack of opportunities in rural areas are manifested in the trafficking of young girls into prostitution in cities or neighboring countries. The trafficking of Nepali girls has been a special focus of investigation. Rates of HIV infection among young sex workers in urban areas range from 17 percent in Nepal (UNAIDS, 2000d) to as high as 72 percent in Mumbai, India (Salunke et al., 1998). Trafficked girls and women are victims of a social system that puts little value on their lives. If they attempt to return to their home communities, they often face extreme stigmatization and discrimination. However, married women in apparently stable relationships are also in great danger in many parts of the world because their husbands are the clients of sex workers or have other semi-permanent sexual relationships. Some cultures consider this behavior to be the norm. For instance, in parts of Southern Africa, men with livestock have long migrated between their summer and winter pastures and jobs, setting up house with a different wife in each location. Overall economic development and the building of good roads in the second half of the twentieth century made such mobile lifestyles even more possible and exacerbated the transmission of HIV in the 1980s and 1990s. In many parts of the world, mobile men such as truck drivers or sailors may have one known family but a number of semi-permanent relationships with women on their regular routes. With HIV/AIDS, such extramarital relationships put wives in danger. Gender issues need to be addressed in HIV/AIDS care and support programs. Women and girls usually play the main family role in caring for the sick, including those who have AIDS-related infections and illnesses. This situation further reduces their opportunities for education and development. Communicators should affect the lives of girls and women in a positive manner by analyzing and working towards changes in both the socially-prescribed gender division of labor and unequal power relationships between men and women. However, it is not possible to change the situation for girls and women without reaching boys and men. “Part of the effort to curb the AIDS epidemic must include challenging

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negative beliefs and behaviors, including the way men view risk and how boys are socialized to become men. Men are expected to be strong, robust, and virile—but these very expectations may translate into behaviors that can endanger both men and their partners” (Piot, 2000). Men face pressures from society to live up to long-standing gender roles. Cultures the world over tend to associate manhood with physical strength and aggressive behavior, bravery, psychological strength and suppression of sympathetic emotions, risk-taking, adventure, and independence. Men are influenced by social pressures that encourage them to prove their sexual prowess, and they may believe that real men take risks, do not wear condoms, nor get sick (Panos, 1998). Men, worldwide, tend to have more sex partners, including extramarital partners, than women, thereby increasing their own and their partners’ risk of contracting HIV. They are also more likely to purchase sex and to initiate violence with their sexual partners (Scalway, 2002b; UNAIDS/Panos, 2001). They generally have more power in sexual relations and decide when, how often, and where sex should take place, as well as whether or not a condom will be used. Young men, in particular, run increasingly high risks of HIV infection, as their age of sexual debut is decreasing in many countries (Scalway, 2002b). The secrecy, stigma, and shame associated with HIV that often discourage men from learning about their HIV status further exacerbate this situation. Although men usually know more about STIs and how to protect themselves from AIDS than women (United Nations, 2002), they are, in general, less likely than women to seek medical attention when they are ill, which may also prevent them from knowing if they are infected (Piot, 2000). Men also suffer from their “machismo.” The gender-defined roles and dominating behaviors expected of them in many societies may block their potential to develop into mature human beings. This leads them to occupations in which they may not be satisfied or which put them at risk. They may feel psychological pressure to succeed and fulfill family expectations, sometimes also resulting in violence against women, often exacerbated by alcohol or drug abuse. Their “machismo” concept also may be a factor in producing large families, which they then find difficult to support, or in having multiple sexual partners, putting both them and their spouses at risk. Programs to tackle “machismo” (see Box 4-4) are few and far between or have been poorly evaluated.

Formative Research Many of the formative research questions in Chapter 3 will apply, since men, women, boys, and girls constitute the general population. However, a gender-based analysis requires that we ask a specific set of questions. The following list is by no means exhaustive but indicates what could be included: l

What differential attitudes and practices are manifested in the affected communities regarding the way boys and girls are brought up and treated in the home (e.g., gender-based decisions on involvement in domestic work and caring for siblings and the ill)?

126 Strategic Communication in the HIV/AIDS Epidemic Box 4-4: “Men Aren’t from Mars”: Unlearning Machismo in L atin America Latin The Catholic Institute for International Relations (CIIR) promotes equality between men and women throughout its programs. Its key aims are to increase women’s participation, particularly in strategic civil and political leadership positions; promote greater awareness about women’s human rights among men and women; and ensure that the priorities and activities of partner organizations reflect greater knowledge about both the causes of and need to reduce gender violence, with a particular focus on masculinity. An example of this work is a popular education project in Latin America that aims to help reduce violence against women by prompting changes in men’s attitudes and behavior. The program consists of a series of workshops run by trainers in the Dominican Republic, Ecuador, El Salvador, Haiti, Honduras, and Peru. The project’s aim is that partners, daughters, girlfriends, mothers, and sisters of the men taking part should become less subject to violent or manipulative behavior. The initiative has the following components: l

l

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Training on Gender iolence: Using a popular education methodology, Gender,, Masculinity Masculinity,, and V Violence: men take part in a series of workshops on gender, masculinity, and violence designed not only to increase their knowledge of the issues but also to challenge and change attitudes and behavior. Training of T rainers: This training equips participants with the tools to duplicate the Trainers: workshop with other men and thus increase the project’s impact. Development workers are also encouraged to form local groups to replicate the methodology and continue the dialogue in their communities. A workbook, El Significado de Ser Hombre, has been produced to support this process. Information Campaign: Through the workshops, links are cultivated with a wide range of local organizations and efforts are made to inform women’s organizations about related events.

Interregional and cross-regional learning are crucial to this project, and networks in which the partner organizations and CIIR are involved are important in disseminating experiences. Source: CIIR, n.d.

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What are the school enrollment, retention, and completion rates for boys and girls? If there are differences, why is this so? Is there any difference in health and social services access between males and females? If so, why? What is the average age of marriage for men and women, and if there is a substantial gap, what are the reasons? To what extent are females involved in choices regarding their own future, such as education and occupation, family planning methods, the decision to get married, and choice of husband? What is the age of sexual debut? Is intergenerational sex practiced? To what degree? Is there trafficking and other forms of violence against women, and if so, what factors reinforce this kind of behavior?

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l l

What are the typical power dynamics in both premarital and marital relationships and what are the reasons for this? How do these dynamics affect sexual behavior? Do women control any component of the family income and does this affect sexual power dynamics? How mobile are men compared to women, and how does this affect their sexual behavior? How do men perceive themselves and their gender-determined roles and how does this affect their potential? Is there a “machismo” culture and how are the lives of men affected by this? Are there positive role models in the community or society that can be used to communicate equity in male–female relationships? What are the channels for reaching men and women? Are they separate or the same and how can they be tapped effectively?

Strategic Approaches A key challenge is to work in and with cultures that often send both positive and negative gender-related message to boys and girls from an early age. Strategic communication is instrumental in changing girls’ self-awareness and skills to delay sexual debut, abstain, or use condoms. Likewise, communication has a strong role to play in shaping the behavior of boys towards girls, starting at an early age; or in involving mature men in becoming more caring and understanding in their roles as boyfriends, husbands, and fathers. Programs should also address the longer-term goal of persuading men and women to reassess traditional concepts of masculinity and femininity and the prescribed roles that accelerate the spread of HIV. In addition, advocacy and communication can also be instrumental in trying to advance new gender policies and overall social norms. However, to be realistic, such changes will take time, and communication alone cannot address deep seated gender inequity. Effective HIV/AIDS communication may involve the use of a number of channels. The choice of channels needs to be informed by appropriate formative research, including a thorough review of the access of females and males to each channel and the channel’s appropriateness for delivering reproductive health information. Mass Media: The media play a significant role in shaping and influencing social norms, including gender roles and perspectives. Not only do men make decisions that affect their families’ lives, but their decisions dominate the workplace and political and social arenas. Their thoughts and words on these matters are carried to people through the mass media. Men, especially heads of state, as well as leaders in the religious community and the private sector, need to be encouraged to speak out and lead by example. Likewise, women leaders can play an important role, such as the First Ladies of Africa who recently formed a movement against HIV/AIDS. Radio, TV, and newspapers can cover events to which they lend their prestige and power. Mass media reflect images of masculinity that many young men imitate. HIV/AIDS prevention programs use media effectively when they disseminate images and story lines of men

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who treat women and girls with respect. Media also provide HIV/AIDS prevention information on which both males and females can act and share with friends. Radio can greatly increase young people’s information-seeking behavior, as found in the Kenya Youth Variety Show (Odallo, 1997). This radio call-in program, the first of its kind in Kenya, attracted an audience of more than 3.3 million adolescents, making it a major source of information and referrals to clinics. The program provided an opportunity to impart information and positive role models. Peer Education: People are influenced by those who have the most in common with them, especially people of the same age and sex. Peer educators provide information in schools, bars, sports groups, religious groups, and community gathering places. They are often selected by fellow peers and must be equipped with knowledge and interpersonal communication skills related to HIV/AIDS prevention, violence reduction, and sexuality. Peer education programs have been found to reduce the incidence of HIV by reducing risk-taking behavior among young people and the educators themselves (Kiragu, 2001). Participatory articipatory,, Community-based Methods: Community-based programs use a variety of participatory learning approaches, including local theater and song, videos, and other external communication tools. Gender analysis should influence the methods to be used (See example in Box 4-5). Box 4-5: Stepping Stones Approach The Stepping Stones Approach, used by over 2,000 organizations in 104 countries, was first developed in Uganda in the mid-1990s. It recognizes that the widespread “ABC” approach often fails to take into account that gender power relations are the main factor in such decisions. Girls and women seldom have the life skills needed to bring about real and sustainable behavior change. Stepping Stones training aims to improve relations between men and women, young and old, and to increase the likelihood of changes in attitudes and behavior, especially those that directly concern HIV/ AIDS prevention and care. The program involves a community-based, peer group approach, and uses learning methods such as drawing, mime, role-play, drama, and song. The methods are not literacy-dependent, and they enable community members to discover new ways of thinking and feeling, to look at problems through a “gender lens,” and to find solutions for them together. In some programs, as many as 18 community sessions are held in one week, involving men, women, boys, and girls. These sessions include developing cooperation and communication skills; exploring facts and feelings about relationships, HIV and AIDS, and safer sex; understanding what influences people to behave in the way they do; and exploring how to practice and sustain behavior change. This approach depends on the recruitment and training of male and female facilitators with experience in the use of participatory methods, gender analysis and concepts, HIV/AIDS/STI prevention and care, the ability to deal with interpersonal conflict, and to counsel individuals when required. The process also requires a good deal of community “buy in,” usually through convincing male decision-makers to become involved and let others participate. Source: Save the Children, 2002a

School-based Channels: In-school adolescents constitute a captive, easy-to-reach audience for behavior programs. The extent to which schools are an appropriate and cost-effective

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avenue for imparting HIV/AIDS education for boys and girls depends on many factors such as the degree of support from the school system, parents and community; the strength of the syllabus; and the quality of teachers. However, developing and maintaining such systems in resource-poor environments has proven difficult. Successful in-school programs are founded on a thorough gender analysis and have as one of their main objectives, positive modeling of gender relationships beginning at an early age. Countries such as Canada, Sweden, and France, which have comprehensive curricula covering a wide range of topics and options for safe sexual behavior, have the lowest teenage pregnancy and STI rates amongst young people (UNAIDS, 2002a). R ole Modeling through Sports Channels: Young men observe, respect, and often emulate the behavior of their favorite sports heroes who can serve as role models. The Caring Understanding Partners (CUP) Program (JHU/CCP, 2002c; JHU/CCP/CECAFA, 1999) involves the training of soccer players and coaches to serve as spokespersons for health topics, including HIV/AIDS. Fans and communities, in turn, receive messages that motivate them to learn more about how to protect themselves and their families against HIV/AIDS. This comes from sports heroes who speak on topics such as the advantages of delaying or abstaining from sex, or why it is really smart to use condoms consistently. The strategy is based on the idea that high-profile, male athletes can help break through barriers encountered in reaching men and encourage them to seek help for health problems, take stock of their own risk behaviors, and share responsibility on reproductive health matters, including the use of condoms. Research has found that when adolescent boys find positive role models, they are less violent, more respectful of girls and women, and more likely to take responsibility for contraception as they become sexually active (Barket and Loewenstein, 1996). Some would argue that sports activities not only enhance physical fitness and life skills, they also keep young men away from risky situations and allow them to “develop and express their masculinity” in healthy ways that are not harmful (UNAIDS/Panos, 2001). Similar strategies have also been attempted in girls’ recreation activities, such as girl guides and girls’ involvement in sports. However, rigorous evaluations have not been carried out on the use of sports channels for behavior change in HIV/AIDS-related behavior. The usually male-dominated “macho” sports events may not always be the best venue through which to communicate messages that will truly lead to behavior change. However, a more comprehensive, community-based approach to sports strategies can be taken (See Zambia case study). Communicating through Health Services: As discussed in detail in Chapter 5, health clinics, especially family planning and ANCs, can provide a channel for reaching women and adolescent girls with HIV-related information and counseling. For example, in response to the increasing rate of HIV infection among Brazilian women in the 1990s, the Sociedade Civil Bem-estar Familiar do Brasil decided to integrate HIV/STI diagnosis and prevention into their family planning services. Thousands of women have benefited from these services and have had the opportunity to practice discussing sexual issues with their partners (UNAIDS, 1998b). However, men usually consider birth control and ANC services to be women’s business that seldom requires their attention, unless there are costs to be paid. More settings are needed to provide effective sexual health and HIV/AIDS-related services

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for men, including adolescents. Both WHO and USAID surveys have found that services for adolescent males are scarce and under-funded, with only a small minority of programs working with them (Scalway, 2002a). Men need reliable reproductive health education and services that offer access to counseling about HIV/AIDS, as well as life events and decision-making. Men also need diagnosis and treatment services. A more holistic approach to sexual and reproductive health care for men will enhance their well-being, equip them to make responsible decisions, result in lower levels of STIs and unintended childbearing, and allow them to become better fathers. “Thus, what is increasingly seen as good for men in their own right should turn out to be just as good for women—to the benefit of men and women as individuals, couples, families, and society as a whole” (Alan Guttmacher Institute, 2002). Existing clinics and health centers can be adapted to create male-friendly spaces, counseling and services (UNAIDS/Panos, 2001). Similarly, VCT and PMTCT programs have found that men need to be involved in care and support services, so that they will not be indifferent or act as barriers, preventing their partners from participating in such programs.

Key Issues to Communicate Gender analysis should form the basis for decisions on issues and messages to be communicated. From a gender perspective, key issues include the following: l

Communicate Gender Equity Clearly: Messages should be constructed with an understanding of the differences between sex and gender—the biological and the social. “Sex” refers to biological differences between men and women or to sexual acts between people. “Gender,” on the other hand, concerns socially constructed roles, qualities, and behaviors expected from men and women, and boys and girls in different cultures. Gender roles are learned and influenced by education, economics, and social status, among others. While an individual’s sex usually does not change, gender roles are socially determined and can evolve over time. HIV/AIDS communication can be used to challenge those gender roles that are harmful to the overall development of people and put them at greater risk of HIV infection. For instance, the socially-defined role for African girls involves the completion of a great deal of housework and minding of siblings, so much so that they are often forced to drop out of school. Keeping girls in school, as long as schools are safe from “sugar daddies,” has been shown as a protective strategy against HIV infection, both because of the protection of the social and physical environment they are in, and the knowledge and skills they learn. Therefore, communicating on a more equitable division of household chores is indirectly linked to HIV prevention.

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Communicate Sensitively that P ower Imbalances in R elationships increase HIV Power Relationships Risks: A central theme in the construction and expression of gender and sexuality is power. It affects individual autonomy, sense of self, the experience of sex, and the opportunities open to women and men. Communication messages and themes need

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to address the power imbalances in relationships and the consequences of these imbalances. They should encourage mutual respect between men and women, boys and girls. Communication should focus on men who show how they care for their partner and families by not bringing HIV into the household. Messages can emphasize that a man’s self-worth is strengthened by actively caring for his partner’s and children’s well-being. Some specific “gender equitable” qualities include men who: – – – – –

are respectful in their relationships with women and do not seek sexual conquest, but rather equality and intimacy, seek to be involved fathers who actively care for their children, assume equal responsibility for reproductive health issues, are not violent towards women, and advise their male friends to be responsible as well.

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Enhance Self -efficacy through R ole Models: Equally, communication programs Self-efficacy Role can show women and girls who stand up to men. Such women demonstrate skills of refusal and self-efficacy, choosing to determine their own future. However, images of women as strident and overbearing may inadvertently cause the audience to reject the message. Careful research on the characters and issues to be included in the programing will help to increase acceptability among members of the intended audience.

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Identify and F eature “P ositive Deviants” in P rograms: Promote and learn more Feature “Positive Programs: about “positive deviants,” those men, women, boys, and girls who demonstrate positive gender values and who practice delay of sexual debut, abstinence, faithfulness, and safe sexual behaviors that prevent the spread of HIV (See Sara case study).

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Promote Dialogue: Open dialogue among community members constitutes a powerful strategy that facilitates a focus on sexuality, gender, and AIDS as steps toward protective behavior against HIV infection (Calderon, 1997). Dialogue among policymakers is especially key, because they may be good advocates for behavioral change and social responsibility (Alan Guttmacher Institute, 2002). Advocacy is required on the need to review national legal frameworks so that they are more responsive to gender aspects of the HIV/AIDS epidemic (UNFPA, 2000).

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Involve P arents: Communication programs should encourage children to initiate Parents: dialogue with their parents about issues related to sexuality and HIV prevention, as well as help parents educate their children about sexuality, responsibility, and HIV.

Challenges and Lessons Learned Starting at an Early Age: There is strong rationale to reach boys and girls at an early age, before they are sexually active, and to continue to involve them. Behavioral research specific to particular culture contexts should drive the themes and messages. However, it is often challenging to deliver appropriate communication on sexual matters to very young people.

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Cultural or religious gatekeepers may derail the program unless they are involved from the beginning. Also, programs cannot assume that young people, once engaged in a program, do not need to be re-engaged. Experience suggests that interventions should be staged by age but have flexible limits. Gender Analysis: All communication on HIV/AIDS prevention and care should benefit from a gender analysis. However, very often only lip service is paid to gender issues in program planning. Gupta (2000) distinguishes gender-neutral approaches “that do no harm” (such as “be faithful” messages), gender-sensitive approaches (which meet the different needs of men and women), transformative approaches (e.g., fostering constructive approaches for men), and approaches that empower women or men (e.g., in improving their access to skills building, services, and technologies). The examples given in this chapter may be helpful in understanding how gender can and should be integrated into various strategies. Access: It is not easy to effectively reach women and girls and empower them to participate more actively in decisions concerning their sexuality. Barriers include cultural factors that inhibit the access of young people, especially women, to reproductive health information and limit their capability to make reproductive health decisions. There is also gender-based disparity in access to the mass media. In some societies, women and girls are not encouraged to go outside their homes without their husband or a male relative. In others, the decision to seek health care must first be sanctioned by a male relative. Gatekeepers: In most societies there are “gatekeepers” in the family whose blessing and involvement are necessary for women’s involvement in any intervention. They may be men or older women, such as grandmothers, who continue to reinforce male-dominated values. For cultural reasons, community gatekeepers may not be willing to support interventions that they perceive to undermine traditional gender roles and relationships. In this regard, it is helpful to start with non-threatening issues on which there is consensus and ready community support before gradually moving on to more controversial topics. A project that sought to promote spousal communication about reproductive health in Guinea was successful in eliciting the support of Islamic religious leaders and increasing social support for family planning because its initial advocacy activities centered around child health and other nonthreatening themes (Blake and Babalola, 2002). L ong-term Commitment: Sexual behavior, influenced and defined by deeply ingrained and sometimes harmful cultural beliefs about masculinity and femininity, plays a large role in the spread of HIV. Programs must enable men to “examine and challenge old harmful concepts of masculinity and create a new definition of what it means to be a man in this new millennium”(The Hunger Project, 2001). The challenge lies in the fact that these beliefs are rooted in traditions that have been reinforced over generations and cannot be dismantled overnight, nor should they necessarily be. Programmers who undertake a close examination will recognize and respect certain healthy gender differences, while at the same time work to influence those that are not constructive and currently facilitate the spread of HIV. Since empowering people to participate more actively in decisions concerning their sexuality often involves changing social norms, achieving measurable impact may take considerable time and resources. Objectives need to be realistic. While norms do not change overnight, with

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persistence, programs can achieve significant changes in knowledge, attitudes, and, eventually, practices. Project implementers may want to adopt a phased approach, first focusing on advocacy through opinion leaders and later focusing on individual knowledge and attitudes as well as on group and social norms.

Case Study: Sara: A Role Model for African Girls as they Face HIV/AIDS UNICEF’s Sara Communication Initiative (SCI) is primarily aimed at delaying the age of sexual debut for African girls and empowering them to deal with the sexual advances from boys and men, including “sugar daddies” and other forms of sexual abuse. The SCI involved extensive formative research and production of an expanding set of communication tools, including animated videos, comic books with users’ guides, posters, and a radio series. Program planners conceptualized, researched, and implemented these tools in 12 Eastern and Southern African countries between 1995 and 2000 and are now expanding to new countries such as Ghana and Nigeria. The Sara stories involve a range of factors determining the positive behavioral development of African adolescents aged 10 to 19 years and address the need for a supportive role by boys, parents, and communities. The creators believed that the stories had to be informative, while motivating people to change. They also had to address the ability or skills of girls to act, while recognizing environmental factors that may facilitate or impede positive change. The creators of Sara recognized that boys and parents should not be left out since any proposed changes in girls’ lives would have to be supported by them. Therefore, the research process and the creation of Sara stories involved boys and adult community members. Various male and female characters of different ages serve as protagonists or antagonists for the cause of girls’ rights. The modeling of positive gender relations, starting at an early age, was especially important. So Sara’s friend, Juma, Sara’s father, and her younger brother all play key, positive roles in her life. To date, these widely disseminated stories have covered a range of topics: staying in school, avoiding sexual abuse and exploitation by truck drivers and “sugar daddies,” avoiding female genital cutting, avoiding teenage pregnancy, breaking the silence on HIV/AIDS, supporting orphans and PLHA, and protecting children from child labor and sexual exploitation in cities and in civil conflict settings. The Sara videos and radio series have reached millions of people in broadcasts throughout Africa. However, the use of Sara print materials in formal and non-formal educational settings is just as important, if not more important for full behavior development of adolescents. It was recognized that training through group processes, including interactive learning methods, is usually required to develop psychosocial life skills for appropriate behavioral responses to risk situations.

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Plate 4-3: The Sara stories provide a role model to empower A frican girls to deal with unwanted sexual African advances. (Credit: UNICEF)

Program activities include: l l l l l l l l l l l l l

National training workshops on the use of Sara materials Development of local Sara materials Formation of core Sara groups for dissemination and utilization Wide use of Sara materials by government partners and NGOs Training of facilitators for effective utilization Establishment of Sara clubs and/or peer educator programs Distribution of Sara materials to schools Broadcast of Sara videos on national television networks Rebroadcast of the Sara radio series on national stations Local language translations of materials Screening of Sara videos to its audiences through video outreach systems Training of local artists and writers Sara advocacy festivals

An independent mid-term evaluation (Russon, 2000) completed during 1999–2000 showed that a high percentage of girls and boys in areas where full programming had been implemented recognized the Sara character. Girls reported the positive influence of Sara in delaying sexual debut and abstaining or avoiding situations with potential for sexual abuse and exploitation. Qualitative research with girls in life skills programs in Uganda and Kenya demonstrated how they used Sara as a role model for protecting themselves from sexual abuse as well as how boys were attracted and motivated by the Sara figure. The SCI demonstrated that engaging cartoon characters, when well researched and programed, can engender discussion in communities and help shift individual behaviors and

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community norms. Evidence from Uganda, a country that has experienced a decline in the incidence of HIV, points to the importance of delaying sexual debut among adolescents. This was central in Sara stories, as were messages to boost self-esteem among young girls and encourage avoidance of sexual exploitation. Sara is being adopted by many user groups in the fight against HIV/AIDS in Africa. Her added value is that she appeals to all age groups and triggers discussion between generations. The SCI encompasses a set of communication tools that have a strong research base and are applicable across many cultures. In addition, the commercialization of Sara materials through an educational publisher (www.mml.co.za) bodes well for future sustainability. Sara stands side-by-side with African girls to address the inequality they face by virtue of their gender. Source: McKee et al., 2003

Case Study: Involving Boys in Zambia: The Chikomeni Youth Camp Background: The Youth Activist Organization (YAO) approach in prevention of HIV/AIDS is tailored to youth in rural areas where there is a dearth of reproductive health information. Trainers teach boys football (soccer) strategies and moves and parallelly impart knowledge, skills, “strategies and moves” in sexual and reproductive health (SRH). Goal and Objectives: The overall goal of the project is to increase male participation in reproductive health/family planning and child health issues in the family. Specific objectives are: l l l

To increase young men’s knowledge about reproductive health, HIV/AIDS, and family planning. To promote safer sex and improve young men’s skills in using condoms. To equip young men with life skills such as decision-making, goal setting, and selfesteem.

Audience: The primary audience of the project is boys aged 14 to 24 years, both in and out of school from rural and peri-urban communities. Each camp works with 50 boys over a period of seven days. As a secondary audience, the project targets participants’ parents, girls aged 12 to 24 years, and the community associations. The football camp at Chikomeni Rural Health Centre (RHC) catchment area presents an instructive case. This area has a population of nearly 11,000 people who live in villages as far as 20 kilometers away from the health centre. In October 2000, YAO conducted the first

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Plate 4-4: Zambian boys at a sports camp, which combines both soccer training and education in reproductive health and HIV/AIDS. (Credit: Youth Activists Organization, Zambia)

Youth Sexual and Reproductive Health Football Camp for approximately 50 boys during a one-week period. Major project activities consisted of the following: Youth R eproductive Health/HIV/AIDS and F ootball T raining Reproductive Football Training raining: These sessions, central to the strategy, were targeted at 50 boys aged 14–24 years. In addition to football skills, peer educators and coaches trained the boys in sexual reproductive health, including HIV/AIDS and STIs (modes of transmission and prevention including abstinence, condom use, being faithful to one partner, and masturbation); hygiene; relationships/gender equity; negotiation and decision-making skills; and community responsibility. Football T rainers’ Orientation Session: At least five men from the community were selected Trainers’ to assist the coach with the football training. Through three-day sessions, the project staff oriented the five coaches in SRH, HIV/AIDS, and family planning. They also taught them how to link reproductive health messages to football. For example, in a football match, players have to protect themselves by using shoe and shin guards. Similarly, in the game of life, one needs to play safe by using condoms, and to acquire the skill to use them correctly. Fathers’ and Mothers’ Orientation Sessions: Other sessions were also aimed at reaching the participants’ fathers and mothers and other men and women in the community. The

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main objective was to provide information to them on their role in the family. The focus was on adolescent reproductive health, communication about these issues within the family and the community, and the role that men can play. Couples/Community Health Session: On the fourth day, the project invited mothers, fathers, neighborhood health committees, women’s associations, and other community members to a session on community health. This meeting provided a platform to identify common health concerns in the community, using participatory games. The group then prescribed their own solution for the identified problems. Community Mobile Video Shows: Shows were held in the evenings. These combined reproductive health and HIV/AIDS information with social awareness drama and movies, along with discussion. Dancing competitions before the movie encouraged participation of the audience. Winners received promotional materials such as posters, makeup bags, or T-shirts. R esults: As a result of the Youth Camp, the community now accepts the fact that the “inheritance of widows,” the tradition that requires a man to marry the widow of his dead brother, is no longer an acceptable practice given the prevalence of HIV/AIDS in Zambia. The records of community-based distributors (CBDs) in the area demonstrated an increase in condom use. The Chairman of the Health Centre Committee at Chikomeni RHC indicated that the camp was popular with parents and youth alike, as attested by the numerous requests for a similar camp for girls. The camp introduced the young men and the community to the importance of discussing SRH issues and taught them that SRH education is vital to protect the well-being of individuals, families and communities. Parents in the community, both men and women, reported that attending the SRH sessions helped them clear a lot of misconceptions on family planning and HIV/AIDS. The Clinical Officer at the Health Centre, Boniface Hamusonde, reported as anecdotal evidence: l l l l

an increase in community participation, greater youth involvement in community affairs, an increased demand for Voluntary Counseling and Testing (VCT), especially among engaged couples, and a heightened awareness among community members regarding the transmission and prevention of HIV/AIDS.

YAO’s overall aim is that, in the long run, participants in such camps will grow into responsible adults, able to use available resources and to make informed choices. Source: YAO/JHU/CCP, 2002

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Sex Workers: Shifting the Balance of Power Rationale It is often said that sex work is one of the oldest and most widespread professions in the world, yet it is perhaps the least understood. Sometimes called “prostitution,” the term is not used here because of its judgmental overtones that can obscure the underlying structural factors (Synergy, 2002). It involves female, male, or “transgendered” persons who receive money or goods in exchange for sexual services. Although these categories of sex workers may have factors in common in terms of causes and consequences, for the purposes of analysis and strategic thinking, this section deals mainly, but not exclusively, with female sex workers (FSWs). Further discussion on male and “transgender” sex workers follows in the next section. FSWs are predominantly younger women and girls who trade sex for money. Sometimes transactional sex for favors or gifts is equated with sex work. However, those who are involved usually do not consider themselves sex workers, and usually society does not consider them so until such activities become their primary source of economic sustenance. In HIV surveillance worldwide, HIV prevalence among sex workers is substantially higher than among the general population; in some places, over 80 percent of FSWs have tested positive for HIV (Ghys et al., 2002). In high prevalence areas, sex workers are particularly vulnerable to HIV infection due to their multiple sexual partners, frequency of sexual acts, often low access to condoms and/or use of condoms, and difficulties they experience in negotiating condom use with clients. In the past, many interventions have focused on individual FSWs, unconsciously perpetuating the notion of them as “vectors” of HIV, placing little emphasis on the role clients play in HIV transmission and prevention and further stigmatizing FSWs themselves. Less attention has been paid to other factors that may be determinants of sex work: poverty, trafficking, debt bondage, and factors that put such women at even greater risk, such as violence, drugs, and alcohol use. Careful analysis of HIV risk in FSWs indicates that causes are complex and multi-layered. A simplified representation of these causes appears in Box 4-6. The long experience in programs for FSWs indicates that addressing immediate causes alone, such as the provision of condoms, information on HIV/AIDS, and skills to negotiate condom use, is necessary but not sufficient to affect change. There have been increasing calls for programs that address multiple levels of HIV risk causation, a more structural approach to the problem (Sweat and Denison, 1995; UNAIDS, 2002a, 2002c). Box 4-6 demonstrates that at the most basic or structural level are the laws and policies regarding sex work. This is perhaps the most difficult to address since sex work remains illegal in all but a handful of countries today. It is most difficult to advocate for or communicate on the informational, social, health, and economic rights of people who are considered by society to be outside the law, whether they operate from the street, brothels, hotels, bars, or their own homes.

Reaching Special Audiences 139 Box 4-6: Causal F actors in FSWs’ V ulnerability to HIV Factors Vulnerability Causal Level

Factors

Immediate

l l l

Underlying

l l l l l

Basic or Structural

l l l l l l l

Limited information, skills, negotiating power Lack of consistent condom supplies Control by clients, pimps, madams, brothel owners, and regular partners Poor access to educational, prevention, and care services Stigmatization and marginalization Alcohol and drug abuse Violence and intimidation/bondage Sexual exploitation and trafficking Income differential and mobility of client populations Economic vested interests to maintain the status quo Cultural and/or traditional beliefs and practices Gender inequity—educational, social, occupational Poverty and limited economic opportunity Lack of political will to change the situation Laws and policies regarding sex worker practices

Source: Adapted from UNAIDS, 2002c

Another basic or structural cause is lack of political will. In very few societies will political figures side with marginalized groups such as sex workers since such actions will seldom help gain popularity or votes. Another basic cause is gender inequity. UNAIDS reports: Although their rights and economic independence are often limited (in some instances severely), women frequently bear the major burden of family obligations. In addition to having limited access to employment, women in many societies have fewer prospects of financial support outside of marriage other than sex work. On the other hand, when bride payments or dowries change hands, young women may come to realize that they are being treated as a commodity. Sex work may offer them more control of their sexuality than their society affords to either married or marriageable women, and using that sexuality for their own profit may seem a viable alternative to marriage (UNAIDS, 2002c). However, sex work is usually more profitable for the traffickers and others who control the trade. Program planners must consider these audiences, among others, when designing an intervention: pimps, madams or brothel owners, and regular partners. The pattern of interaction is often complex. Sex workers also develop sexual relationships with pimps or other men as surrogate “husbands” or regular partners who provide emotional support in exchange for free sex. The power and the role of these players can vary considerably and must be addressed in the design of any intervention. Clients of FSWs may be adolescent boys, single men, or married men with families. Studies of the prevalence and spread of HIV have found that the rate of HIV among sex workers is

140 Strategic Communication in the HIV/AIDS Epidemic

highest in places where the clients are very mobile, such as truck stops and port cities. The danger of unprotected, paid sex that exists in many places is more frequent amongst professions that compel men to be away from their families and communities for extended periods of time. For instance, miners isolated in camps for months at a time often seek out sex workers, as do sailors arriving in port after weeks at sea. Other groups of men who use sex workers frequently are men in the armed services, including the military and the police. The cultural values and traditional beliefs of clients are a basic factor that increases vulnerability as well. For instance, as noted in the previous section, the “machismo” culture of men may motivate them towards accessing FSWs. Young men are often encouraged to have their first sexual experience with an older woman—usually a FSW (UNAIDS, 2002c). Traditional beliefs also increase risk. For instance, the false belief that having sex with a young girl is a cure for syphilis has also emerged as a cure for HIV in both Africa and Asia—a belief that has increased the demand for very young sex workers and put them at great risk (UNAIDS, 2002c). This brief analysis of complex and varied patterns of human behaviors, with various causal levels, clearly demonstrates that programs for FSWs require program approaches that are holistic or integrated, addressing immediate, underlying, and structural or environmental factors. Extensive formative research is needed to determine the “shape and size” of interventions and how communication can play a strong role.

Formative Research Formative research questions for FSWs include the following: l l l l l l l

l l l l

Is sex work regular or occasional? Is sex work legal or illegal and what other laws and policies protect sex workers or make them more vulnerable (e.g., rape or violence in sex work)? What is the nature of the settings where contacts are made with clients (brothels, streets, hotels, bars, massage parlors, cinemas, or other locations)? Who are the clients and how often do they avail services? What is their average number of clients per day? What are the various prices charged by different types of FSWs in different locations and what are their working conditions? What is the socio-economic and educational status of all those involved in commercial sex (e.g., FSWs, pimps, clients, regular partners) and what are the main occupations of clients? What is the rate of regular condom use with these various players? What is the history and current level of STIs? Injecting drug use? What knowledge, myths, and misconceptions do FSWs and their sexual partners have about SRH, condoms, and related subjects? What psychosocial and technical skills do FSWs have, for instance in negotiating and using condoms?

Reaching Special Audiences 141 l l

What are the social and culture factors that motivate men to use commercial sex? What level of stigma is associated with sex workers and with accessing their services? (Adapted from UNAIDS, 2002c)

These questions are far from exhaustive. However, they represent a good starting point in the process of developing the foundation of an effective program.

Strategic Approaches As noted, experience has shown that communication strategies must be grounded in a more holistic program approach that addresses some of the structural and underlying factors that contribute to HIV transmission in sex work. Each of the strategies listed must be tailored to take into account the diverse ways in which sex work is practiced worldwide. Communication Approaches Various communication strategies can be used and linked to the structural approaches. These are: Advocacy for Changes in L aws and P olicies: Advocacy can be carried out with health, Laws Policies: social service, and legal authorities, largely through interpersonal contact, lobbying and negotiation, or through presentations at workshops and seminars. The object is to foster changes in the policies and laws that discriminate against sex workers, drive them underground, and increase their own as well as their clients’ risks. It is unlikely that laws and policies will change easily. However, sometimes authorities will agree to “look the other way” and avoid applying laws or policies that they realize do more harm than good. For instance, in Andhra Pradesh, India, after exposure to the issues, the Chief Minister authorized the release of a letter to all police authorities that measures their performance on the basis of the arrest of traffickers and pimps, not FSWs who are usually victimized, in spite of the fact that sex work remains illegal in India. Interpersonal Communication and Counseling: Health professionals and others can be trained in interpersonal communication (IPC) and counseling for sex workers, including issues of stigma and discrimination. In addition, health professionals should counsel male patients on sexual practices, including paid sex. However, IPC and counseling on such subjects is no easy matter. Many health workers bring their own biases and judgmental attitudes about commercial sex. Training programs must be in-depth and need to include on-the-job monitoring and supervision following training. Communication Aids: Flip charts, both informational or in the form of stories, with audiocassettes sometimes, are used to support IPC and make it more effective. These can be produced in a larger format, for group facilitation on the issues, or smaller, for interaction with one to three people. Other communication aids, such as small booklets, music cassettes, T-shirts, stickers, banners, and related items can be used to reinforce IPC and group methods

142 Strategic Communication in the HIV/AIDS Epidemic

and to popularize programs within the locale. It is essential that literacy levels of FSWs be known before producing print materials designed for them. Anatomical models of the penis can be useful for demonstrating correct condom use and other educational purposes. Community-based Media: Entertainment–Education strategies, such as community theater, have proven very popular in program settings, both for FSWs and their clients. Scripting should be thoroughly pretested and there should be minimum variations from the final script. Quality assurance in message delivery is essential. Dramatic stories and messages should be “processed” by the audience with the help of trained facilitators so that messages are made clear to everyone. Peer Education: The reason for using peers instead of health professionals to deliver prevention messages is that peers are often able to gain trust and have credibility that outsiders lack. FSW peers, some of whom are still practicing sex workers, will usually be less judgmental of sexual behavior and life choices than health professionals. Peer educators can impart knowledge and skills to other sex workers on correct condom use, ways to negotiate the use of condoms, and strategies for coping with violence and stigma. They can also distribute condoms and communication materials, as well as provide referrals to services. They can work on the street, in bars, clubs, brothels, hotels, or drop-in centers. Peer educators can also reach clients in the places they buy sex or in the workplace (e.g., military barracks, mining camps, truck rest stops). Mass Media: Mass media is less frequently used in the case of HIV prevention and care in sex work because of the high probability that wide public exposure may further blame and stigmatize FSWs. However, with careful scripting and formative research, TV and radio programs, drama, and other forms of entertainment can educate audiences about the situation of FSWs and the causal determinants of their profession. This may help to decrease stigma and discrimination, as well as open up discussion. However, care must be taken not to simply shift blame and stigmatize other groups such as truck drivers. It is imperative to address causes at various levels, rather than to focus on particular groups as “core transmitters.” Linkages to Services Interventions that change the normative or regulatory conditions of sex work are known as environmental and structural interventions. They may require substantial advocacy to gain support and communication in their implementation. Examples are given here: Distribution and Marketing of Condoms: Sex workers require condoms to be readily available in large quantities. Different programs have provided condoms to sex workers and clients in various ways, including handing them out for free and selling them at reduced prices. Examples cited earlier are those of Thailand and the Dominican Republic, which mandated 100 percent condom use in brothels. These interventions did not require sex workers alone to insist on condom use. They placed much of the responsibility on those with power, the brothel owners (Sakondhavat et al., 1997). One innovative solution to maintaining a constant supply of condoms for sex workers is social marketing, which makes these available at many sources.

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In fact, sex workers can sell condoms to fellow workers, providing them with additional income. Groups of sex workers have been able to negotiate lower prices for bulk purchases of condoms and then market these among sex workers and clients. Some programs have used the profits for literacy training, health care, or subsidizing condoms for sex workers who are unable to afford them (UNAIDS, 2000c). Health Services and Drop-in Centers: FSWs and their clients need regular SRH services, cervical screenings and treatment, STI treatment, VCT, access to condoms and other contraceptive methods, and maternal and child health services, as well as regular health services. Often they do not use services because they are made to feel stigmatized and ashamed when accessing these. Establishing special sites where sex workers can access such services can help diminish this reluctance. Alternatively, services such as those for STI diagnosis and treatment may be “franchised”—that is, training can be provided to regular medical practitioners for a standard protocol of services that are inspected and then “branded” and monitored to provide an identity for the marketing of these services. In addition, a safe, comfortable space for sex workers to gather can serve as a venue for providing education, support, and services. Drop-in centers can be the focal point for the implementation of many prevention and care strategies. Outreach: Sex workers may not feel comfortable accessing services such as condom provision and HIV prevention counseling in a clinical setting, as they may feel that facilities serving the general public would not welcome them. If this is the case, it is important to offer services where sex workers gather and are likely to feel most comfortable. Peer educators are often involved in outreach work. Community-Based: Sex workers are seldom viewed as a community in themselves. They are often controlled by others and have little power to organize for their rights. However, experience has shown that if they are organized and facilitated to analyze their own situations, they are able to develop their own code of practices (Sangram, n.d.). They have the capacity to demand their rights to protection through consistent condom use by clients, a decent livelihood, health and social services, security, and even care for their children (See Sonagachi Project, Box 4-7).

Key Issues to Communicate As indicated, communication interventions must be integrated with service delivery approaches. Simply delivering messages to sex workers will have little impact. Therefore, the following suggestions for key issues to communicate should be seen in that light. Emphasize HIV Infection Risk: FSWs and clients both carry a high risk of contracting HIV. Messages should communicate real levels of risk, as well as how to lower risk. Messages that are overly laden with fear will likely be rejected by those who “live on the edge.” For instance, a woman who has been subjected to discrimination, violence, and mistreatment or a truck driver who spends long hours on insecure roads may not see the intangible, distant death threat of an incurable disease as something to fear.

144 Strategic Communication in the HIV/AIDS Epidemic Box 4-7: The Sonagachi P roject in K olkata, India Project Kolkata, Sonagachi, the “golden tree,” is the oldest and largest red-light district in Kolkata, West Bengal, India, and is home to a community-run sex worker project. It started in 1992 as a health promotion project to inform sex workers about AIDS, provide STI services, and promote condom use. The project has now evolved into a multifaceted community project to create an enabling environment for sex workers to act on their own behalf. One key event was the establishment of a sex worker union, which advocates for the decriminalization of prostitution, workers’ rights, and entitlement to negotiate working conditions. The basic approach of the Sonagachi Project is respect for sex workers and recognition of their profession, as well as reliance on their understanding and capacity. Based on a philosophy of empowering sex workers, the project has multiple components that contribute to its success: peer education, brothel-based STI clinics, and an AIDS awareness group using music, dance, and street theater. In terms of results, consistent condom use has increased from 1 percent in 1992 to 50 percent in 2002, prevalence of syphilis has dropped from 25 percent to 11 percent, and HIV prevalence is currently around 5 percent. This level is very low compared to the 51 percent prevalence among their colleagues in Mumbai (Bombay) in Maharashtra, India. The project also includes a school for sex workers’ children, a loan co-op, and peer-led literacy classes. The main reason for the success of the project is the reconfiguration of power balances between sex workers and their clients since the women belong to a union that sets the rules of sexual interaction, including obligatory condom use. The project has expanded to reach an estimated 60,000 sex workers in the State of West Bengal and plans are in place to reach even more. Source: Horizons, 2002c; Jana, 2002; Jana et al., 1999; UNAIDS, 2000c

Communicate Correct Condom Use: Condoms must be used correctly and consistently to be effective. Messages should incorporate the issue of expiration date and how to store, use, and dispose of condoms correctly. It is important to emphasize that condoms are a tool for “safer” sex rather than “safe” sex (See Challenges and Lessons Learned). Strengthen Condom Negotiation Skills: Sex workers may fear that insisting on condom use will result in violence or loss of income. Strategies to negotiate effectively for condom use that build sex workers’ confidence and self-efficacy should be included in communication programs. However, as has been shown in Thailand’s 100 percent condom program and the West Bengal example (see Box 4-7), when structural changes take place, the power of laws and policies rather than the skills of one person support such negotiation. This approach is much more effective. Emphasize the Need for P rotection with R egular P artners: Sex workers who use condoms Protection Regular Partners: for commercial sex often choose not to use them for sexual relations with pimps, regular partners, or “husbands” who give them protection and emotional support in exchange for free sex. Programs should encourage FSWs to protect themselves in all types of relationships and to realize that they are not likely to be the exclusive sexual partner of such men. However, this is not easy to communicate since the power balance in these relationships usually does not favor FSWs. Promote VCT and STI T reatment: Diagnosis and treatment for STIs and VCT for HIV, Treatment: while helpful in preventing the transmission of HIV, may not be a personal priority for

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FSWs for a variety of reasons. Helping them see the personal benefits of diagnosis and treatment of STIs and VCT can increase their motivation to act. However, attitudes of health professionals with regard to sex workers also need to be addressed (Wojcicki and Malala, 2001). Formative research will help program planners understand the stigma involved and what will be most motivating to a particular community. For instance, older FSWs very often have children and may be concerned with their future. Using this as a motivational factor may be effective.

Challenges and Lessons Learned The challenges in prevention, care, and support in the area of sex work are many: Condom Effectiveness: Even if condoms are used consistently, a good estimate of their effectiveness is 90 percent. Therefore, in regions of high HIV prevalence, consistent condom use might increase the average time until infection for a full-time FSW from 6 months to 60 months—small consolation for such women (Hearst and Chen, 2003). There is some evidence that FSWs in Thailand are becoming infected in spite of the 100 percent condom program in brothels (Kilmarx et al., 1999). It is difficult for communicators to address such information when it is circulated. However, for the time being, in commercial sex work there is no alternative prevention method except non-penetrative sex and masturbation. Even though the female condom has shown high acceptance among FSWs, for example in Zimbabwe, the main obstacle to its use was the client’s mistrust of unfamiliar methods (Ray et al., 2001). In the future, microbicides may be an additional protection if they come into the market and if FSWs can afford them. Some sex workers also use female condoms to reduce their risk of HIV infection. Acceptance: Groups from outside the sex worker community who attempt to implement interventions may find that gaining access and trust is one of the biggest challenges faced. Due to the discrimination sex workers have faced, they may be distrustful of outsiders offering help or solutions. Stigma and Discrimination: Dealing with stigma and discrimination in the context of marginalized and often criminalized professions is difficult. Stigma and discrimination impact a sex worker’s ability to negotiate safe sex practices, seek medical care, and access social services. Sex workers are sometimes seen as “core transmitters” in the early stage of an epidemic. Such language can isolate them, push them “underground,” and make them difficult to reach. In fact, studies have shown that sex workers are among those most likely to respond positively to HIV and STD prevention programs, for example, by increasing their use of condoms with clients (UNAIDS, 2002c). Stigma and discrimination against sex workers reinforce violence by clients, pimps, and sometimes the police. Violence against sex workers is a serious impediment not only to their human rights but also to HIV prevention, since levels of violence influence condom use. About 49 percent of Bangladeshi sex workers reported, for example, being raped by the police and 68 percent by thugs/pimps (Jenkins et al., 2002).

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Addressing stigma and discrimination is a necessary step toward enabling sex workers to protect their own health and the health of their communities. Coercion, V iolence, and T rafficking: Coerced sex work in the form of debt bondage, trafViolence, Trafficking: ficking, or sex work of very young girls is a growing problem worldwide, and presents additional challenges to HIV prevention. Women coerced or forced into sex work have even less power to negotiate safe sex than sex workers who make a choice to enter the profession. Once forced into sex work, usually far from home, many of these women do not have the option of going back, as they may have been traded into sex work by impoverished family members and will most likely face rejection by friends and family if they return (Beyrer, 2001). A few specific lessons learned are as follows: l

l

l

l

l l l l

l

There are still gaps in our knowledge of many aspects of sex work and many assumptions made about sex workers that are not necessarily true (Wojcicki and Malala, 2001). For example: assumptions about why people sell sex and to whom; that all sex work involves penetration; and to what extent, given other choices, women (and men) who sell sex would choose another occupation (Gysels et al., 2002). The active involvement of sex workers in program design and implementation is an essential component of successful interventions, not only to gain access to sex worker communities and to gain their trust, but also to fully understand the needs, beliefs, and behaviors of sex workers and clients—a prerequisite for effective project planning. Facilitating the formation of coalitions, collectives, and advocacy groups composed of sex workers can be a step toward sustainability and increased capacity. Groups of sex workers who gain skills and are empowered to take steps to identify and address their own needs can form organizations that, with training and capacity strengthening, can eventually implement projects independently or in partnership with others. It is important to recognize the stigmatization and abuse of human rights that sex workers face, and to address these issues through project design and implementation. UNAIDS has stated that “one of the clearest public health lessons emerging from the HIV pandemic is that protecting the human rights of sex workers is one of the best ways to protect the rest of society from HIV” (UNAIDS, 2000c). Police and local authorities should also be involved in program design with sex workers. Programs should design interventions for brothel owners or pimps and clients, as well as sex workers. Health and social service staff must maintain non-judgmental attitudes toward sex workers and include stigma-reduction strategies in the intervention. Those who stand to gain financially from sex work (e.g., madams and brothel owners) should be made aware that they have an interest in preventing HIV. Programs can build interest and capacity among these people as well. Paying attention to them will ensure that sex workers are not further disempowered. Stakeholders among groups of sex work clients such as heads of military institutions, trucking firms, and mine owners are valuable partners in HIV prevention activities and can gain the skills to implement their own projects to protect their employees.

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Case Study: SHAKTI Project of Bangladesh Background: In Bangladesh, there is a traditional system of collective societies of FSWs living together in brothels with some recognition and protection, as well as health services (Khan and Arefeen, 1992). However, this system has begun to break down in a number of urban locations, and an estimated 100,000 FSWs sell sex to clients in hotels, lodges, and on the streets (Bloem, 1999). In Bangladesh society, women in general, and sex workers in particular, face gender-based violence such as acid attacks and rape due to their low status and lack of power. Bangladesh has a low HIV prevalence among female sex workers, remaining only at 0.5 percent for the past three years (DGHS, 2003). This scenario presents an enormous opportunity for keeping HIV prevalence and incidence low. The SHAKTI project in Bangladesh addresses HIV prevention among two of the most stigmatized and vulnerable communities: sex workers and IDUs. SHAKTI, which means “power” in Bangla and stands for “Stopping HIV/AIDS through Knowledge and Training Initiatives,” aims to increase sex workers’ use of condoms and to provide access to quality STI treatment services in order to prevent HIV infection. The project works with both street-based and brothel-based sex workers, as well as brothel owners and other stakeholders. SHAKTI is implemented by CARE International, with funding from DFID in partnership with the Marie Stopes Clinic Society to provide STI services, and with local NGOs and groups of sex workers to facilitate implementation. Audiences and Strategy: SHAKTI uses a peer education strategy to deliver HIV prevention messages and provide affordable condoms to sex workers. Over 170 volunteer peer educators and 55 paid outreach workers have provided IEC services to their fellow sex workers on the streets and in brothels. SHAKTI also provides sex workers a comfortable place to gather; drop-in centers offer sex workers a place to bathe and rest, access HIV prevention information and condoms, receive literacy training, and get medical services. The drop-in centers serve as a hub for SHAKTI’s prevention activities with sex workers. In order to ensure that sex workers always have a supply of condoms available, SHAKTI peer educators have become condom providers as well. SHAKTI is able to buy condoms in bulk, and the peer educators sell them to their peers at a slight profit. Part of these profits are put back into a fund for the neediest sex workers. R esults esults: The SHAKTI project has been evaluated using biannual surveys among sex workers as well as monitoring data. Brothel-based surveys have shown a clear increase in the percentage of sex acts protected by condom use: from less than 20 percent in 1996 to more than 75 percent in 1999. Protected sex with regular partners also increased, as did knowledge of the value of condom use (from 36 percent to 87 percent) in the same period (UNAIDS, 2000c). Lessons Learned: The SHAKTI project shows that it is vital to address sex workers’ needs beyond their need for STI services and condoms. Providing services like bathing facilities and literacy training offers opportunities for further HIV communication while meeting sex workers’ most pressing needs.

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Involving sex workers in each step of design and implementation offers the opportunity for sustainability and ownership of the project by sex workers. The effectiveness of the sex worker-managed condom marketing scheme is a testament to the importance of audience participation strategies and primary audience involvement. Source: Bloem, 1999; UNAIDS, 2000c

Reaching Men Who Have Sex With Men Rationale HIV/AIDS first caught the wide attention of public health officials and the public at large in the early 1980s when it became known as the “gay disease” or Gay-Related Immune Deficiency Syndrome (GRIDS). At first it was thought only to be transmitted between men who have sex with men (MSM)—mainly through unprotected anal sex. This is because most cases were self-identified gay men. In fact, “patient zero” was later identified to be a gay Air Canada flight attendant who directly infected 26 of the 39 other men first identified to have HIV (Klovdahl, 1985). The scientific evidence on the dangers of the disease that was gathered by the Center for Disease Control and Prevention (CDC) in Atlanta was largely ignored by US government officials. The reasons for this were conflicting budget priorities, bureaucratic inertia, and anti-gay stigma and homophobia (the fear and hatred of homosexuals), which also inhibited political will to do anything about the outbreak. Similarly, the media were reluctant to cover it (Singhal and Rogers, 2003). It was at this time that President Reagan’s “moral majority” movement was first taking root in the American political scene, bringing with it a neoconservatism linked to a Christian fundamentalism that does not recognize the rights of homosexuals. It was only when it was discovered that HIV could be transmitted heterosexually, and probably had been so transmitted in the 1970s or earlier, that more attention and resources were added to the fight against the virus. Meanwhile, gay men in the US, western Europe, and Australia experienced the death of unimaginable numbers of loved ones, friends, and members of their communities. They formed coalitions for advocacy and actions for HIV/AIDS prevention, care, support, and treatment, as well as the human rights of PLHA. Experience in San Francisco, where gay men could live openly, demonstrated how a community could organize from within to control the spread of HIV and mitigate the effects of AIDS. This positive example was replicated elsewhere, and by the early 1990s, the rate of new HIV infections dropped dramatically among MSM in the US (CDC, 2001a). As noted, gay men themselves pioneered many of the early HIV prevention interventions and later on played important roles in the development of prevention policy, thus demonstrating the power of peer-led and community-based interventions against HIV/AIDS (Kippax

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and Race, 2003). This development may have lent support to reinvigorating the gay rights movement that had been strong in the 1960s. In some countries it may have led to advocacy and increased recognition of the view that gay couples often live in stable relationships and have the right to be treated in the same way as heterosexual married couples, and also the right to rear children. However, this is not to say that all problems are solved for gay men in the West. There is growing evidence that today many younger gay men in North America and Europe, who were not part of the movement in the 1980s and 1990s, see HIV as a concern of the older generation and do not follow the protective measures needed for preventing HIV infection (Catania et al., 1998; CDC, 2000; Imrie et al., 1999). In addition, many African-American MSM do not self-identify as “gay” to avoid stigma from their own communities and families. Consequently, some members of these groups have tended to avoid prevention behaviors, with a resulting steep rise in the rate of HIV infection recently (CDC, 2001b). The experience of African-American MSM is similar to the experience of MSM in much of the non-western world where interventions for MSM do not receive the same attention. In sub-Saharan Africa, the epidemic is perceived to be exclusively driven by heterosexual transmission. Also in Mexico and Central and South America, where the early cases were only reported among homosexual men, the rapid shift to heterosexual transmission patterns has directed attention away from prevention and care interventions for MSM (Aggleton et al., 1999). Stigma against homosexuality still pervades many of these societies, and in many developing countries, including sub-Saharan Africa, homophobia often leads men to hide their sexual preferences to prevent being shunned by friends, family, and society. Usually, religious bodies and codes reinforce such stigma (UNAIDS, 1998c). The stigma against homosexuality causes some men to marry women to conform to social norms. In fact, in many parts of the world, MSM may not identify with any of the usual categories such as “gay,” “homosexual,” or “bisexual” (MAP Network, 2001) (See Figure 4-2). In India, it has also been reported that married truck drivers on the road with adolescent boy helpers sometimes engage in anal sex with them when FSWs are not available or when funds are low. In fact, providing such services to truckers is often a gateway for young, roadside cleaners and vendors to become helpers and eventually drivers themselves (Astana and Oostvogels, 2001). Evidence from Bangladesh indicates that the society-imposed separation of boys from girls leads to a significant amount of same-sex activity between adolescent boys, usually experimental and often regarded as “play” rather than sex. Such behavior is not usually based on sexual preference or a “gay” identity. In one study in Dhaka, nearly nine out of 10 respondents between 5–18 years of age reported that their first sexual experience in adolescence was with same-sex older relatives, friends, or neighbors, indicating sexual abuse by older boys and adults. There is also considerable evidence of adolescent boys’ involvement in transactional sex with older boys and men (Kabir, 2002). It is evident that the identities and behaviors of MSM around the world are many and varied and that interventions that prescribe easy answers, developed outside of the communities of MSM, will usually not be accepted and will most likely fail. In addition, in some countries, sex work and IDU (which are independent risk factors for HIV transmission) are prevalent among MSM, and these factors serve to compound the risk involved, even more for

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those who do not feel comfortable having a gay or other identity (Rietmeijer et al., 1998). In-depth formative research is required, with the full involvement of MSM themselves, in order to determine the direction and focus of programs.

Formative Research A review of the formative research questions in Chapter 3 for the “prevention messaging” (“ABCs”) and “stigma” sections would reveal certain common issues that should also be taken up here. In addition, specific questions for the development of programs for and with MSM in various communities or geographic areas may be as follows: l

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What various identities and occupations do MSM have in the community or area of intervention? How do they perceive themselves? As communities or cohesive groups or as individuals? What are their educational attainment levels and literacy rates, socio-economic status, as well as other factors that may influence how programs will need to be developed? What are the general patterns of MSM relationships (e.g., Is it common for MSM couples to have an agreement that sex with others may be allowed under certain circumstances? Is the use of condoms part of that agreement)? What is the pattern of sexual partner change in the various categories of MSM within a given time? What are the predominant MSM sexual behaviors and where do they occur? Where do MSM normally congregate—in specific cities or elsewhere? Is there a significant pattern of sex work amongst MSM? What rates of STIs and IDU prevail and in which MSM groups? Where do they or could they access sexual health services, condoms, and VCT? Is MSM behavior illegal and, if so, how is it dealt with by the police and legal authorities? How open is the society towards MSM? Can they live openly? What attitudes do the police and judges, health and social workers have towards MSM? Are there any opportunities for policy change and if so, who are the gatekeepers and who might influence them? What is the attitude of the media and general public towards MSM? Which are the most likely channels to reach and work with MSM? What groups exist for MSM interventions or are open to work with them?

This list of questions is by no means exhaustive. In fact, MSM are often best placed to identify the most appropriate questions to ask in a given community. These are only suggestions to be expanded on and further refined in a particular program together with MSM networks.

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Strategic Approaches Like other vulnerable groups, MSM need comprehensive, sensitive, culturally-appropriate interventions to prevent HIV transmission and to provide care, treatment, and support for PLHA. Developing programs with them involves a process of working with and through social networks and providing interventions where MSM are most likely to be receptive. MSM themselves are normally the main actors in developing such programs. The following strategies have been found to be helpful in the design of interventions and in planning programs. Communication Strategies Advocacy: Sensitizing the police and legal authorities, health and social service provision managers, and the media about the realities and vulnerabilities of MSM is a challenging task since the behavior being discussed is often illegal or forbidden. However, such advocacy can take place through interpersonal contact, targeted presentations in seminars, and private meetings. Simple fact sheets may be useful to leave behind. Mass media can be used in societies that have already reached a level of acceptance but should be avoided if it is likely to increase stigma. IPC/C: In order to facilitate behavior change that reduces the risk of HIV, MSM need interpersonal communication and counseling (IPC/C) services. Health professionals and social service providers should be prepared to counsel MSM clients on safer sex behavior, STI treatment, and VCT. In many countries, health providers are not comfortable discussing these issues with MSM, as they believe the latter’s behavior is wrong or immoral. Such stigma may prevent MSM from revealing their sexual preferences or identity, thereby reducing the chances that they will receive the information and counseling they require. Health professionals can be trained in counseling techniques with MSM to help the latter overcome stigma. Counseling is important, not only in making decisions about condom use and sexual behavior, but also in addressing other HIV risk factors associated with some MSM, such as drug use and commercial sex work. Peer Education: Peer educators play a critical role in MSM communication programs. Peer education involves the knowledge and skills of people with great empathy and can be used to access often hard to reach MSM. Peers are often able to gain trust and establish credibility that outsiders lack. They are usually less judgmental than non-peers and can be used to educate other MSM on correct condom use, to distribute condoms and lubricants, and to refer their clients to other services when required. These activities can be undertaken in a facilitybased setting or in less formal places. Many countries have gay bars and clubs that can possibly be used as intervention sites for informal, peer-led education. In countries where MSM behavior is very repressed, private parties may be an appropriate channel for communication activities. Social settings are good venues for creative and sometimes explicit educational activities such as games and contests (e.g., contests with prizes for successfully demonstrating condom use on a penis model).

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Provision of Communication Materials: MSM need accurate information about HIV in order to protect themselves and their partners. Programs can provide MSM with the tools to prevent HIV through information and communication materials. Many MSM do not know enough about HIV to take precautionary measures or believe it is only a “western disease,” a disease of IDUs, or a disease of “gay” men with whom they may not identify. In societies where MSM are stigmatized, pocket-size materials that are less visible can be produced. These can be put into a cartoon format to make them humorous and appealing.

Plate 4-5: Discrete, pocket-size communication materials for MSM. (Credit: Humsafar Trust, Mumbai, India)

Hotlines: Telephone hotlines can provide quality STI and HIV information and counseling, as well as referrals. Counselors must also be trained in counseling on issues of sexuality and sexual identity for men who are questioning or struggling with their sexual preferences. Hotlines are very important for those who wish to remain anonymous. Internet: The Internet can be a tool for people to meet and socialize. It has been used as a social networking tool, particularly among MSM in developed countries or in places where the Internet is widely accessible. MSM use the Internet to meet partners and “chat” on-line, and it can also be used to convey HIV prevention information and locations for services. In many societies, MSM have above average educational achievements and so such channels are not unrealistic. Mass Media: As with FSWs, mass media may be used to address stigma against MSM. However, a great deal of research and careful design are required to produce effective programs

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that do not further stigmatize them. In Nicaragua, the program Sexto Sentido had a gang character, “Angel,” who portrayed the difficulties that gays face in a very sympathetic manner. Despite conservative social norms, this character was instrumental in creating new insights into gay issues for the general public. Linkage to Services Drop-in Centers and Outreach: Since they are often highly stigmatized, MSM may not feel comfortable accessing services in a clinical setting or may not realize they are at risk and should seek services. Many MSM groups and intervention projects have provided a safe, comfortable space for MSM to obtain information, support, counseling, condoms and lubricants, and even clinical services. Drop-in centers should be established in a location convenient to MSM and should be open during the hours that are most appropriate to their needs. An NGO for MSM in Mumbai, The Humsafar Trust, provides such a safe space for MSM, counseling services, peer education programs, a hotline service and condom supplies. Working from this center, outreach workers can offer communication materials, condoms, counseling, and referrals in bars, homes, parks, gyms or on streets. In order to address the other factors that may make MSM vulnerable to HIV, programs should provide referrals to appropriate, friendly services, such as drug addiction treatment, STI and VCT services, general health care, and employment counseling.

Key Issues to Communicate There are some basic issues to convey to all categories or identities of MSM. However, the social and contextual factors in which MSM find themselves will determine the manner in which these issues can be communicated, as well as what other issues should be included. These may include, for instance, how to avoid exploitation and violence in situations that may endanger personal security, and how to avoid being arrested in societies where homosexuality remains illegal. Such issues must be developed in context. R einforce that HIV is not V isible: One cannot tell if a sexual partner has HIV unless the Visible: partner has been tested. If people do not know the status of their partner (whether male or female, commercial or not, steady or casual), they should use condoms. Promote the AB Cs: While similar prevention messages (abstain, be faithful to an uninfected ABCs: partner or reduce the number of casual partners, and use condoms for anal or oral intercourse) are applicable, MSM in the West are also familiar with a concept called “negotiated safety.” This relatively safe practice allows for discarding condoms among known seronegative partners who negotiate and agree only to have sex using condoms outside their relationship (Kippax and Race, 2003). Communicate Clearly that all Unprotected P enetrative Sex is Risky: Some men may Penetrative believe anal sex is less risky than vaginal sex, when in fact the risks are greater. MSM need

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to know the risks associated with anal sex and the importance of using condoms. It is especially important to reinforce the message that a condom needs to be applied before penetration and to address the myth that early and non-rough penetration poses no risk (Calzavara et al., 2002; Hoff et al., 2002). Clear Up Misconceptions about Oral Sex: Penis to mouth sex also involves some risk, especially if there is transmission of body fluids through cuts and lesions. It is advisable for the “active” participant not to ejaculate in the mouth. Condoms can also be used as a protective barrier. Promote Non-penetrative Methods: There are many non-penetrative ways to enjoy sex, including mutual masturbation and “thigh sex,” and these should be encouraged to reduce risk. Condoms Must be Used Correctly and Consistently: People should be made aware that condoms may break when an oil-based lubricant is used. MSM also need to know that condoms must be used with both male and female partners, for commercial and non-commercial sex, and with steady and casual partners. When one gets used to using them and when lubricated properly, they can prolong orgasms and increase pleasure. Alcohol and Drug Use: These factors increase the chances of HIV transmission, either in relation to sexual behavior, or in the case of IDU, directly.

Challenges and Lessons Learned HIV/AIDS programs with and by MSM were the first to be established. However, there are still many challenges to overcome in such interventions: Stigma and Homophobia: These may be the greatest challenges facing communication efforts aimed at HIV prevention among MSM. Stigma influences not only how others treat MSM, but how men, including young men, view themselves and their needs as well. If they are uncomfortable accepting their sexual preferences or behavior, they may avoid protective messages. The way a particular society views and treats MSM also affects the care and services MSM can receive. If it is not socially acceptable to discuss MSM, and if MSM are viewed as aberrant or immoral, initiatives to prevent transmission of HIV in MSM are less likely to be developed. MSM Identities May Be Complex: Reaching MSM who do not self-identify as MSM is another challenge. An excellent example to demonstrate how programs must be formulated on local realities comes from India. The Humsafar Trust has described the complexity of MSM identities (see Figure 4-2). The concept of MSM includes hijras, or eunuchs, who are part of societies that once had social, ceremonial, and occupational functions in courts and rich households. They continue today in various societies or forms including sex work. “Straight” men sometimes seek out hijras because they are considered more sexually skilled than women but are feminine in

Reaching Special Audiences 155 Figure 4-2: MSM Identities in India

Source: Humsafar Trust, Mumbai, 2002

manner and dress. In this example, neither the hijra, nor the man who engages in sex with the hijra, would consider himself an MSM. Other MSM identities include transsexuals, those who identify themselves as bisexuals, and those who are behaviorally bisexuals, and a large number of separate occupational identities that may be available for commercial sex, such as film extras, gym boys, hotel boys, bar boys, and masseurs (malishwala). Truckers and their helpers, taxi drivers, and migrant workers may be involved in MSM behavior as well. On the other hand, only a very small percentage of MSM think of themselves as “gay,” and gay identity may either be “kothi” or “panthi,” those who are “receptive” and those who are “active” in penetrative anal sex (Astana and Oostvogels, 2001; FHI, 2000a; Kavi, 2002). Behavioral Disinhibition: In the West, ART has given PLHA new life and new hope. The possibility of life-sustaining treatments has also given rise to a sense of “treatment optimism” accompanied by complacency about HIV and its prevention. Many young MSM in the US and western Europe now believe that HIV is a condition that can be managed, if not totally cured, and they are taking fewer measures to protect against HIV than the older generation. This trend is known as “behavior disinhibition.” Such factors, along with a sense of fatigue over constant vigilance in prevention, have led to a new rise in HIV transmission among MSM in the West (Katz et al., 2002; Kellogg et al., 1999). In fact, there are examples in the US and Europe of young MSM wanting to belong to HIV-positive groups where they receive more attention, social and health services, and gain a sense of “belonging” to a community.

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In fact, a recent documentary film called The Gift picked up the topic and created controversies at prestigious film festivals across Europe, the US, and Australia. The film offers the unique perspective of a small subculture of HIV-negative men in the western gay male community who actively seek to become or are completely indifferent about becoming HIV-positive (Dream Out Loud Productions, 2003). In order to overcome this trend, new strategies and approaches are needed to help MSM understand that HIV is still very much present, there is still no cure, and, above all, that the use of ARV drugs, taken over the long term, provides less than a positive picture in terms of quality of life. In countries where antiretrovirals will soon become available, the challenge remains to ensure that MSM do not perceive them as a cure. Peer Education: This is an effective tool for communicating HIV prevention messages to MSM. However, programs must select peer educators carefully and train and support them adequately. The quality of the peer education intervention will determine its success. It must be done in the right situations and contexts, which can be identified by formative research. Adjusting Strategy: Programs can benefit from midstream adjustment to accommodate local situations. Because local MSM communities differ and established strategies and messages are not always transferable between cultures, it is important to monitor progress and results during project implementation and make adjustments to strategy as needed. Gaining P artnerships: NGOs and social groups addressing IDUs, sex workers, youth, or Partnerships: other vulnerable groups should be encouraged to integrate MSM issues into their work, thereby expanding the partnerships of intervention programs. Best P ractices: Lessons learned from the region or country in which a program is implemented Practices: can help shape program design and avoid mistakes. But western interventions that have worked well in Europe and Australia may not work as well in Asia, for example. So regionally focused materials and case studies will be most helpful.

Case Study: Naz Foundation Trust of India Background: India is a country with an HIV paradox: comparatively low HIV prevalence but high HIV burden. Because India has a population of one billion people, even a low HIV prevalence represents millions of PLHA. UNAIDS estimated that at the end of 2002, India had 3.82 and 4.58 million people living with HIV/AIDS (UNAIDS, 2003). Heterosexual transmission is thought to be responsible for the majority of infections but in certain areas, such as in the Northeastern states and in inner cities, IDU is an important factor. As the epidemic worsens, MSM communities have become increasingly vulnerable.

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Audiences and Strategy: The Naz Foundation Trust was established in 1994 to address issues of sexual health, HIV/AIDS, and STIs among MSM, women, truck drivers, and PLHA. The MSM program focuses on encouraging responsible sexual behavior among MSM in a non-judgmental, positive way. The Naz Foundation’s MSM program emphasizes increasing knowledge about HIV, including modes of transmission, risk-reduction strategies, and means of accessing treatment. These prevention efforts are implemented through a number of intervention strategies, including: l

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Community outreach: nine outreach sites staffed by eight outreach officers disseminate information, discuss sexual behavior and other issues, demonstrate condom use, and provide referrals. STI referrals: Naz operates STI clinics for people at risk of HIV and STIs, and MSM are encouraged to attend. For those who do not wish to be identified as MSM by entering an STI clinic for MSM, referrals to MSM-friendly physicians are provided. Social groups and meetings: three different support and social groups meet regularly, each intended for a specific sexual self-identification. Counseling: telephone hotline and in-person counseling exists to address issues of concern amongst MSM.

R esults: The MSM interventions implemented by Naz have been evaluated using monitoring data and a survey. These data show a number of positive results. The percentage of men who use condoms “all the time” increased from 11 percent to 43 percent, the percentage of men who visited an STI clinic rose from 24 percent to 56 percent, and use of condoms by male sex workers rose from 20 percent to 43 percent. In addition, safe sex practices increased while the practice of unsafe behaviors decreased: for example, the percentage of men who had receptive penetrative sex fell from 54 percent to 34 percent, while the use of lubricants and mutual masturbation increased. Lessons Learned: Although the men served by the Naz project were all “MSM,” Naz recognized that their various self-identifications required tailored interventions to reach them effectively. Careful audience analysis and formative research are an essential part of understanding audience composition and needs. Reaching the female partners of MSM is important for the prevention of HIV. The Naz Foundation found that gaining access to the female partners of their clients was not easy, and they continue to try to look for ways to reach this audience. Source: Rakesh, 2002; UNAIDS, 2000e

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Prevention and Injecting Drug Users Rationale The sharing of contaminated needles through injection drug use (IDU) is one of the primary behaviors most responsible for HIV transmission in many countries. The drug of choice varies across populations. In Manipur, India, for example, the drug is heroin while in Kolkata it is buprenorphine. In Ukraine, it is a homemade brew made from poppy heads called “poppy straw.” In addition to needle sharing, which can also be responsible for other infections such as hepatitis C, various studies have found injecting drug users (IDUs) to be disproportionately involved in the sex industry or to engage in high-risk sexual activity (UNAIDS, 2001b). IDU contributes to an increased incidence of MTCT among females or female partners of IDUs. It also contributes to increased transmission through other sexual contact between IDUs and non-injectors (UNAIDS, 2001b). Such behaviors create a gateway or “bridge” for HIV to enter non-injecting populations. In Latin America, Eastern Europe, Russia, and the New Independent States, nascent epidemics are fueled, in large part, by IDU. The New Independent States have the steepest HIV infection curve in the world, and 80 percent of these infections are due to IDU (ICAD, 2001; IHRD, 2001). In many countries in Asia, including China, Malaysia, and Vietnam, IDU is the primary route of HIV transmission as well (Reid and Costigan, 2002). However, in sub-Saharan Africa, the continent most affected by HIV, IDU is not a major route of transmission. With a comprehensive prevention and harm-reduction strategy, including BCC, it is still possible to reduce HIV prevalence among IDUs in these countries and to prevent the bridging of HIV into the general, non-injecting population through effective, targeted interventions. However, IDUs are hard to reach since their activities are illegal and they can be arrested, prosecuted, jailed, or executed for their use, depending on the country they live in. Moreover, in Asia, Europe, and Eurasia, the majority of IDUs are married, which means that issues around sexual transmission need to be addressed (UNAIDS, 2001b). Therefore, the sexual partners and spouses of IDU form important sub-audiences. Another group at particularly high risk for HIV infection are prisoners. In most countries, strict policies that do not allow the distribution of condoms and clean needles in most prisons heighten the risk of HIV transmission among incarcerated IDUs and other prisoners. (UNAIDS, 1997b)

Formative Research Some of the questions that need to be answered are as follows: l l

What types of drugs are being used and what are their effects on people? Is drug use illegal and, if so, what are the law enforcement policies (e.g., how are various drug users, including IDUs, prosecuted and punished)?

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What are the socio-economic profiles and living conditions of IDUs? What kind of language do they use to describe their practices? Do they see themselves at risk of contracting HIV? What knowledge do they have about this? Do people routinely trade sex for drugs? Who injects and with whom? What services exist for IDUs? Is there a needle exchange program? Is drug detox/ treatment available? What are the likely paths of transmission from IDUs to the general public (e.g., sexual partners, including long-term partners, casual partners, and sex workers)?

Strategic Approaches Based on international experience, many organizations working with IDUs try to prevent further infection and promote behavior change through harm reduction at various levels (UNAIDS, 2001b). Harm reduction aims to minimize the personal and social harm of IDU, but not to eliminate drug use. While the eradication of addictive drug use is desirable, in the long run, harm reduction emphasizes the risk of HIV infection. It is a public health approach that focuses on intermediate steps of promoting the use of sterile injection equipment, drug treatment, or substitution programs, rather than disciplinary and penalizing strategies (FHI, 2001). The strategies described below are focused on the role of strategic communication and will help IDUs avoid reusing and sharing contaminated injecting equipment; will encourage them to protect themselves and their sexual partners from sexually transmitted HIV; and will help them gain access to services and treatment to mitigate the harm of IDU. Communication Strategies Advocacy and Social Mobilization: Advocacy and social mobilization strategies, such as broad coalition building, direct lobbying, community consultation, and involvement of IDUs in grassroot mobilization activities have been shown to be effective (Small, 2002). They may be used, for instance, in trying to establish harm-reduction measures such as syringe exchange and methadone maintenance, which have been shown to be quite effective in reducing HIV transmission. However, opposition to implementing these programs persists in many countries (Des Jarlais et al., 2002). The same is usually true for the resistance to distributing condoms in prison. Promotion of Sterile Injection Equipment: Information materials promoting the use of sterile equipment can educate IDUs about ways to inject more safely and how to reduce the risk of sexual transmission though condom use and VCT. Materials should be developed with the help of networks of IDUs, where possible, and can be distributed at health services during peer outreach sessions and at IDU meeting places.

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Peer Education: Peers can be very effective at carrying prevention messages to IDUs. Peers may be recovering IDUs or stable IDUs who are able to communicate prevention messages and concepts to their friends, contacts, partners, and community (Vuong et al., 2002). The reason for using peers instead of health professionals is that peers are often able to gain trust and have credibility that outsiders lack. Peers are also more likely to be non-judgmental of injecting behavior than health professionals. Projects can involve peer educators in the distribution of communication materials, condoms, and bleach kits; the provision of referrals to further services; counseling for behavior change and drug treatment; syringe exchange programs; and outreach. Life Skills T raining: One of the best ways to prevent HIV infection is to ensure that young Training: people do not begin to inject drugs at all. In many settings, young people are at risk due to lack of skills, lack of opportunities, boredom, and the presence of drugs in their communities. A communication intervention can best address a young person’s need for the skills it takes to remain drug-free, such as interpersonal skills and thinking skills. Through a life skills training strategy, youth can develop these skills to improve their ability to make choices to protect their health and their future. Life skills training includes interpersonal skills (including partner communication and negotiation), thinking skills (including decision-making and problem solving), and coping skills (including coping with emotions, stress management, and self-esteem). Links to Services R eferral to Health and Social Services: Providing IDUs and their partners with referrals to health and social services can help them maintain their health, prevent HIV, and treat their addictions. They have a constellation of health concerns such as STIs, TB, hepatitis, and abscesses. Programs should make referrals to health care providers who are sensitive to the unique needs of IDUs. These health needs are not always a priority to IDUs, however. Immediate issues like housing, acute poverty, and addiction are often more pressing. Meeting these needs, where possible, will allow individuals to address long-term survival strategies. For this reason, interventions intended for IDUs should develop strong links to social services that are equipped to address these social needs. Outreach: Taking interventions to IDUs rather than expecting them to seek out services is a way to increase the reach of programs. IDUs are often uncomfortable utilizing facilitybased services for many reasons, including criminalization and discrimination, inconvenient hours or locations, cost, and a lack of interest in the services being offered. Reaching into the community and offering services by trained street workers at times and in places that are convenient for IDUs is a potentially more effective approach. Outreach can take the form of offering services in parks, on certain streets, in homes, or during non-working hours. Condom provision, HIV/AIDS communication materials and activities, counseling, needle exchange, and STI services can all be offered through outreach. Partners and family members of IDUs should be addressed as well.

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Needle Exchange: Exchanging clean needles for used, possibly infected ones decreases HIV transmission among IDUs. Studies show that needle exchange does not increase injecting drug behavior (Hagan et al., 2000). Needle exchange can be part of a larger approach to HIV prevention, sometimes referred to as harm reduction. Harm reduction seeks to change the conditions associated with drug use that are responsible for the spread of HIV in the IDU community (Hilton et al., 2001). Needle exchange is a strategy to provide clean injecting equipment to those who need it, and as such, it is a clinical service. Needle exchange is also a means of reaching some of the hardest to reach IDUs with communication strategies like counseling and referral to further services such as VCT, STI treatment, and drug treatment. Needle exchange programs should follow the principles discussed in relation to “outreach” in the previous section. In particular, needle exchange should be provided in places and at times convenient to IDUs. Mobile vans, stationary sites, pharmacies, and 24-hour automated dispensing machines form part of needle exchange strategies. However, providing clean needles to IDUs is illegal in many countries. Thus, the development and implementation of a needle exchange program should be done, if possible, in cooperation with local authorities, police, and communities. Dispensing bleach and information on how to properly clean injecting equipment is another strategy for harm-reduction that should be included in interventions for IDU. Programs can work in conjunction with a needle exchange program or as part of an intervention that does not include needle exchange.

Key Issues to Communicate Programs directed to IDUs must overcome distrust. Using peer educators and involving IDUs in the development of messages and materials is crucial with this audience. l

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Create awareness among the general public about transmission through IDU and the role played by stigma and discrimination against IDUs in creating barriers to service access. Train health service providers to be sensitive counselors in service provision for IDUs. Explain the dangers of needle sharing and discourage it as risky behavior. Remind IDUs to disinfect needles before use and show them how to do this. Discuss sexual risk-taking under the influence of drugs. Promote condom use and other safer sex measures, including the reduction of sexual partners. Promote the various services available to IDUs (VCT, needle exchange, detox, counseling, street workers, peer educators) and encourage IDUs to use these services (including how to access them). Promote HIV/AIDS support groups and positive living.

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Challenges and Lessons Learned Legal Issues: Injecting drug use is illegal in most countries of the world. The fact that the intended audiences for interventions are usually criminalized and marginalized makes reaching them challenging. It is difficult to reach out to IDUs and gain trust in order to carry out prevention and harm-reduction interventions, research, and evaluation. IDU networks exist in many western countries, and now increasingly in Asia and Eastern Europe too. Programmers should closely collaborate with these networks. Needle Exchange P rograms: One of the most effective methods of preventing HIV infection Programs: among IDUs is needle exchange, according to most research. However, this type of program remains illegal in many countries of the world. Even in places where needle exchange is legal, funding agencies often do not consider needle exchange a part of their mandate. Further research, education, and lobbying around this issue is needed. An interim solution is linking projects that may not be able to directly provide needle exchange with a needle exchange service provided by another organization in the same region. Stigma and Discrimination: Stigma and discrimination towards IDUs can prevent the effective implementation of programs to prevent HIV infection. Some people believe that IDUs have brought the infection upon themselves and do not deserve to be helped. This attitude can affect the care doctors provide IDU patients, the way police and communities treat them, and the programs that organizations are permitted to implement. Specific lessons learned include the following: Preventing a General Epidemic: Preventing the spread of HIV among IDUs through sexual contact can help contain an epidemic and prevent outbreak into the general public. Interventions designed for IDUs should include strategies and messages concerning safe sexual behavior with long-term partners, casual sexual partners, sex workers, or IDUs engaged in sex work. Sex work is intrinsically connected to injecting drug use, both because people often trade sex for drugs, and because sex workers often inject drugs. Promoting condom use and providing condoms for all IDUs is essential, but it is particularly important to reach men and women who participate in sex work, either as workers or clients. For IDUs, purchasing condoms is likely to be secondary to purchasing drugs, so programs should consider the benefits and drawbacks (e.g., lack of sustainability) of providing free condoms as part of their strategy. IDU interventions that promote faithfulness to one partner or reduction in number of sexual partners are important for the prevention of HIV transmission. Studies show that decreasing the numbers of partners is effective in decreasing HIV prevalence, and that IDUs will decrease their number of sexual partners in response to programs designed to achieve partner reduction (Chitwood et al., 1990). In Asia and the New Independent States, the regions of the world hardest hit by HIV among IDUs, the majority of IDUs are married. The high rate of marriage acts as a platform for discussing “being faithful” in the context of marriage and caring for the health of one’s partner.

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Involving IDUs: Working in partnership with members of the IDU community and seeking input and guidance from the community will greatly enhance the effectiveness of the projects. Because people who inject drugs may face stigma and legal action, it is essential to gain their trust and use their knowledge. Services and Communication Linkages: Clinical services and counseling services for IDUs should be provided together, as far as possible from the same service delivery site and by the same providers, such as peer educators, outreach workers, and health professionals. Program staff must ensure that adequate clinical services are available to support IDUs’ efforts to make the difficult behavior changes that are the goal of counseling and other communication interventions. Community-based groups and NGOs with a history of working with IDUs often have the ability to provide the communication element of IDU interventions and provide referrals to clinical services or offer them on-site. These groups may be in a better position to weave together the communication and clinical elements of the intervention than medical facilities or providers. L ocal R esources: Local NGOs with experience working with IDUs are a valuable resource Resources: for project design and implementation. Groups that already have a history of working well with IDUs are in a good position to help implement HIV prevention activities, and their experience and relationships can be invaluable in tailoring projects to local conditions and needs. Fulfilling Other Needs: HIV prevention is not always the top priority for someone who is injecting drugs; the need for drugs, food, shelter, and other health services may take precedence. For this reason, meeting these needs, or providing referrals to other services that will, is often a necessary part of an intervention designed to reach IDUs with HIV prevention messages. With basic survival needs met, IDUs can look at long-term survival and HIV prevention. Building on Successes: When designing communication interventions for IDUs, program planners should become familiar with what has been implemented in the past and build on proven approaches. There are good peer education and harm-reduction “how-to” manuals available, that contain case studies and examples from all over the world. The UNAIDS website (www.unaids.org) is a good resource for accessing this information.

Case Study: IDUs in New Delhi, India Background: In some cities in India, HIV prevalence among IDUs is as high as 85 percent, whereas the infection rate among the general public is still under 1 percent. This variance makes prevention work with IDUs essential, not only to protect individuals who inject drugs, but also to prevent the virus from seeping into the general population. The Indian NGO,

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Sharan, has been working with IDUs since 1979 and has been a pioneer in implementing and advocating for harm-reduction interventions to prevent HIV among IDUs (AIDS Analysis Asia, 1996). Audiences and Strategy: Sharan has developed a broad range of services for IDUs in New Delhi, offering them clinical, social, and educational services to prevent HIV and mitigate the harm of injecting behavior. Western countries have long used methadone treatment to help drug users either quit drug use or stop injecting behavior. One of Sharan’s initial HIV interventions was the introduction of a sub-lingual (i.e., placed under the tongue) drug substitute for injected drugs. Indian IDUs primarily inject buprenorphine, a painkiller that is manufactured locally and easily acquired in injectable ampoules. Sharan tried the same methodology as methadone treatment, but used an oral dose of buprenorphine for substitution therapy. In addition, Sharan implemented a needle exchange program and offered drug rehabilitation through its sister NGO, Sahara, whose mandate is drug treatment. Throughout these interventions, IDUs were registered in the drug substitution therapy and/or needle exchange program, and process indicators were recorded to measure the progress of this intervention. Sharan employed recovering drug users as outreach workers to deliver services to IDUs in the community, building on the years of trust built between the NGO and its constituents before the HIV epidemic. The program planners actively sought input from IDUs on their needs and preferences throughout the implementation process and then used this feedback to tailor the program. Sharan developed a drop-in center to deliver services including needle exchange, oral substitution therapy, and medical care. In addition to these largely clinical services, the program offered IDU counseling, education, and referrals to other services. IEC activities included peer education, group counseling, provision of information on sexual transmission of HIV, provision of free condoms, and drug use prevention programs. Sharan’s success is measured, in part, by its ability to not only function despite the illegality of drug use, but to expand. Sharan has implemented harm-reduction activities in five cities in India, and it has been instrumental in helping India, as a whole, to accept harm reduction as a tool to prevent HIV transmission. R esults l l l

Thirty-three percent of IDUs registered with Sharan have stopped using needles. Twenty-one percent of IDUs registered with Sharan have stopped sharing injecting equipment. Advocacy efforts contributed to acceptance of harm-reduction strategies to prevent HIV by the Indian government.

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Political support is both important for project success and attainable through advocacy. Incorporating the input of IDUs into program planning enhances the impact and functioning of the intervention.

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Offering a range of services and providing referrals to others helps meet the immediate needs of IDUs and enables them to address HIV prevention.

Source: AIDS Analysis Asia, 1996; Dorabjee, 1998

Reaching Mobile Populations Rationale Every year millions of people move within their country or across borders. Some move due to their highly-mobile vocations, such as truckers, railway workers, and seafarers. Workers who migrate for a limited period of time or a season include agricultural workers, military, logging, construction, and mining workers. Others migrate for an extended period of time in search of better living conditions, or due to violence or human rights abuses (see next section). Those constantly on the move are most at risk. HIV rates are higher along transport routes and in border regions, as well as in areas with more seasonal and long-term mobility than elsewhere. Programs can be designed to reduce their vulnerability to HIV and AIDS (Box 4-8). Mobile workers are placed at risk by several factors. They spend long periods of time away from home and may look for ways to alleviate loneliness or boredom. They may also feel that the new context provides them with freedom to experiment with behavior that would not be accepted in their own communities. Risk-taking behavior, such as visits to sex workers or drug dealers, may increase. Because of their mobility, they are hard to reach with information and communication strategies. Services for mobile groups are difficult to provide and usually poorly-developed. As these groups return home, they place their families and contacts at risk as well. A few studies have found disproportionate rates of HIV and AIDS among migrants (UNAIDS, 2001c). Migrants are people who have taken up residence in a new location for an extended period of time. They may not necessarily engage in more risky behaviors, but are more vulnerable because of their isolation from the surrounding community. They face uncertainty in terms of sexual norms and are confronted with cultural and linguistic barriers, fears of discrimination, and additional barriers to HIV prevention information, VCT, and treatment and care. Data in Figures 4-3a and 4-3b indicate that between 1996 and 2001, these programs in Tamil Nadu for key target audiences—truck drivers and sex workers—produced marked increases in condom use during last non-regular/paid sex encounters, as well as decreases in sexual relations with paid partners (Figure 4-3c) and other non-regular partners (Figure 4-3d). In other words, primary sexual behavior change in the reduction of sexual partners,

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alongside increased condom use, has now been clearly demonstrated among this huge mobile population of India. Box 4-8: R eaching T ruck Drivers in India Reaching Truck In India, some government officials continue to argue that condom promotion violates the sociocultural norms of the country. Others argue that male sexual behavior is so deeply ingrained that such communication programs would be futile. A targeted intervention by NGOs at hotpoints along the roads has shown positive results. In the figures below, TH refers to truckers and their helpers and CSW to commercial sex workers. Source: APAC, 2002 Figure 4-3a: Condom Used during

Figure 4-3b: Condom Used during

L ast Non-regular Sex

L ast P aid Sex Paid

Figure 4-3c: Sexual Intercourse with

Figure 4-3d: Sexual Intercourse with

Paid P artners Partners

Non-regular P artners Partners

Source: APAC, 2002.

Migrants with very little bargaining power are especially at risk: undocumented migrants, refugees and internally displaced people, and women and girls (UNAIDS, 2001c). They may avoid official sources of information and services because of their uncertain residence

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status and fear of deportation. Due to coercion or lack of employment choices, they may accept work in risky occupations vulnerable to exploitation, such as domestic work or sex work. Migrant girls and women are also vulnerable to sexual violence and rape. Lacking the power to defend their rights, they are unable to prevent HIV or demand social and health care services. Living with HIV/AIDS is complicated by mobility. Similar to other PLHA, challenges for mobile PLHA include disclosure to their families and friends, fear of stigma and discrimination, lack of resources for treatment, and being refused care. In addition, continuity of care becomes nearly impossible, as providers change with every new location (ArandaNaranjo et al., 2000).

Formative Research An indicative but not exhaustive list of research questions follows: l l l l l l l

l l

What are the gender and age compositions of the intended audiences? What are their countries of origin, their languages, and cultural identities? What is their legal (or illegal) status in the host country and what consequence does this have on their access to services? What are potential collaborating services, projects, and regulations in their homecountries? What knowledge of HIV and AIDS do they have? What are the prevalent gender and sexuality norms? What are their social networks and who are the people close to them or influencing them in their decision-making (host community, faith-based leaders, employers, family, etc.)? What aspect of their current situation puts them at the risk of HIV infection? What media reach them regularly: radio, print, other?

Strategic Approaches Working with people who are constantly on the move requires innovative approaches. They are often in a particular location only for a brief time, and generally do not access community resources. One way to reach mobile groups is through the people around them, such as migrant community organizations or people who have frequent contact with them. For example, the Truck Drivers Project in Vietnam recruited “frontline social workers” who were not truckers themselves but had frequent interaction with them: waitresses, toll-gate attendants, restaurant owners, and petrol pump attendants (World Vision, 2001). These educators found that the best time to approach truck drivers was right after their meal. In this relaxed state, they were the most receptive to information about HIV/AIDS. For mobile populations, communication approaches and structural approaches should be linked.

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Communication Approaches Peer Education: Peer educators are an effective way to reach mobile populations. Fishermen, truck drivers, and commercial sex workers, for example, can be trained to share information about HIV with their peers and encourage safe practices. Because the peer educators are mobile themselves, they can reach groups in many locations, although tracking results may be a challenge. In Cambodia, the government established a peer education program for the police, the military, and de-miners who locate and disarm landmines (Fletcher, 2000). Peer educators wear identifying T-shirts and caps, and provide information and advice in all units. Research from Vietnam revealed that peer education at workplaces such as construction sites is an effective and affordable way to reach migrant workers (Dadian, 2003). Communication Outreach: Offering information and services in locations frequented by mobile groups is an effective way to reach them. Programs can reach migrants at community events or at shops, restaurants, and cafes catering to their needs. They can arrange other small group presentations, street theater, or one-on-one discussions in harbor facilities, military barracks, or streets where migrant sex workers are present. The Zimbabwean military and an NGO called CONNECT organized workshops on HIV/AIDS for officers, trained peer educators, and developed materials (FHI, 2002b). Outreach programs must take into consideration the evolving cultural context that influences sexual behavior and health care utilization. An education program for migrant youth in Israel included discussions not only about sexual health, but also about resettlement and sexual relations in the old country and the new (Shtarkshall and Soskolne, 2000). Box 4-9: Hot Spots and Risk Zones High-risk behavior often occurs in specific locations such as truck stops, harbors, and markets. Targeting these areas helps to reach all groups involved in risky behavior. The Indian NGO, Bhoruka AIDS Prevention, and Nepali NGO, General Welfare Pratisthan developed complementary programs for people traveling across the border. Numerous highways converge at the two border towns and about 2,000 truckers pass through every day. Outreach staff on both sides of the border emphasize the same messages and use similar IEC materials. They exchange information on the best communication strategies for reaching truckers and sex workers. Bilingual referral cards direct people to local clinics for STD treatment. Source: FHI, 2002c

Information and Condoms: Programs should make available materials about HIV and STDs—as well as condoms, sterile needles, and syringes—at sites frequented by mobile groups. These materials must be in relevant languages and appropriate for the specific cultural contexts of the mobile groups. In the Netherlands, informational materials on safer sex were developed in consultation with peer educators from among migrant sex workers, and were produced in multiple languages (Mens, 1996). This approach ensured that the message was understandable and acceptable to the sex workers.

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Interpersonal Communication in Health Settings: Health professionals who work with mobile groups in both the origin and destination communities need appropriate training about HIV/AIDS transmission and treatment. In addition, staff that speaks the language and has a good understanding of the cultural context of migrant health must be available. The concepts of illness and medicine may vary with culture and require careful communication. Cultural mediators who serve as go-betweens or health professionals that are themselves migrants can help explain HIV information in a culturally meaningful manner. The TAMPEP project in Europe recruits cultural mediators of the same ethnicity or nationality as the migrant sex workers with whom they work and trains them to serve as an intermediary between the migrant and possible service providers (Brussa, 2002). TAMPEP also provides training to social and medical establishments on how to respond to the needs of migrant sex workers. Workplace Communication Interventions: Employers of mobile groups play a critical role in HIV prevention. Owners of trucking or migrant industries, heads of military, or sex business owners employing migrants should have a policy in place regarding HIV prevention and support for employees with HIV/AIDS. Their support can significantly impact outreach efforts. For example, the National Employment Council for Transport Operating Industry (NECTOI) in Zimbabwe developed an outreach program for truck drivers and their associates (FHI, 2002b). At project sites along major highways and border crossings selected in conjunction with local leaders, commercial sex workers provided information and distributed condoms. In addition, the project included drama groups that performed at project sites, a weekly radio program, and informational materials such as posters, T-shirts, bumper stickers, and booklets. NECTOI also introduced a code of practice on AIDS and employment to its member truck companies, increasing support for employees. Service Links Facilitate Access to L ocal Services. Local government, NGOs, and employers should consider Local what is making these groups more vulnerable to HIV and what the impact is on the local community as they seek ways to provide comprehensive services. For example, projects should address not only truckers, miners, or members of the military, but also the commercial sex workers they visit, girlfriends, and spouses. The Carletonville project in South Africa focused not only on the miners but also the community around them, including young women and sex workers (Campbell and Williams, 1999). The project provided improved STD services through government and mine hospitals and clinics, general practitioners, and traditional healers; distributed condoms; and organized peer education programs. Involvement of all stakeholders—including local township groupings, local and provincial health departments, the gold mining industry, and the trade unions—made the comprehensive approach possible. Linking the Communities of Origin and Destination Destination. This important strategy has many advantages. The communities can share and exchange information and materials. Programs can provide support to mobile groups before travel begins and link them to sources of support at the destination. FHI works with Cambodian seafarers in Thailand and also with their

170 Strategic Communication in the HIV/AIDS Epidemic

families in Cambodia, offering information and counseling, and supporting home care services for people with HIV or AIDS (Andriote, 2000). Coordination of Action Research on AIDS and Mobility (CARAM) partners work with migrants before their departure from their homes and also at their new location. For example, CARAM prepares migrant workers departing for Malaysia on what to expect and provides ongoing support once they arrive (UNAIDS, 2001c).

Key Issues to Communicate A few key issues to build upon are as follows: l l

l l l

Motivate audiences to take extra precautions against HIV while traveling. Remind them that everyone is at risk for HIV and that risky behavior away from home still has the same consequences (e.g., Take care of your health: It moves with you!). Use the prevention ABCs: abstain, be faithful/reduce partners, or use condoms every time. Motivate audiences to inform themselves about AIDS in their new community. Advocate for decent living and working conditions and the respect for human rights.

Challenges and Lessons Learned Integration: A project focusing only on HIV among mobile groups and not on the host community has the potential to stigmatize them, aggravating their already marginal position. Sensationalist media reports or alarmist comments may increase discrimination, leading mobile people to deny that HIV/AIDS is an issue and to respond more harshly to cases of HIV among them. Such treatment may lead the host community members to assume that HIV does not affect them. Activities with mobile groups need to be part of a broader strategy for HIV/AIDS in the community. Broader Context: Mobile groups may have other more pressing challenges than HIV/AIDS. Difficulties with residence status, poverty, discrimination, and adjustment to the new environment and culture make the importance of safe sex pale in comparison. Programs need to consider the broader context of HIV/AIDS prevention and care and to explore multisectoral collaborations that, for example, address the living and working conditions of migrants and strengthen the family unit by allowing mobile people to travel with their families. Hard to R each: Certain subgroups of the mobile population are extremely difficult to reach. Reach: Undocumented workers may avoid any attention. Men having sex with men, drug users, or those involved in sex work may be isolated from their own migrant community. In addition, the lack of political will and legal support hinder efforts to reach these groups. The process requires time and a building of trust through carefully planned, long-term projects.

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Involving Mobile Groups: To be most effective, the planning and implementation of a project needs to involve mobile groups themselves, especially those that have HIV/AIDS. They have first-hand knowledge of the barriers to HIV/AIDS prevention and care and can provide guidance in the development of relevant interventions. L ocal Support: Support from the existing community leadership is critical. Without the support of migrant community leaders, senior officers in the army, or business owners employing migrant workers, the project will quickly run into difficulties. The project needs to be a partnership. Capacity-building: To build capacity, it is necessary to provide information and services in the appropriate language and use tools such as Participatory Learning in Action (PLA) to determine the levels of risk behavior in a migrant community and plan projects. Training peer educators from the community in communication, assertiveness, sexuality, and negotiating safe sex is an excellent way forward.

Case Study: The Lesedi Project Among South African Miners Background: The mining industry of South Africa draws migrant workers from other parts of South Africa as well as from neighboring countries. The workers generally live in singlesex dormitories and draw on the services of commercial sex workers in surrounding areas. Studies have found HIV rates of 23 percent and 28 percent in different mining sites in South Africa (Day et al., 2000). The Harmony Gold Mining Company Ltd. near the city of Welkom in Free State Province employs approximately 4,000 miners each year, most of whom are migrants (De Coito et al., 2000). Formative research found that most of the risky behavior took place between miners and commercial sex workers. However, while information, condoms, and STI treatment were available to miners at mining clinics, the sex workers were neglected (De Coito et al., 2000). Furthermore, STIs facilitated the transmission of HIV. Strategy: Recognizing the role of STIs in facilitating HIV and the importance of treating both partners, the project aimed to reduce the prevalence of STIs in order to reduce HIV among miners and their partners (UNAIDS/WHO, 2000). The intervention included: l l l l

A mobile clinic providing monthly presumptive treatment for STIs to women at high risk. Peer educators from among sex workers and other women at high risk. Health education on STDs, HIV and condom promotion. Syndromic management of STIs. (UNAIDS/WHO, 2000)

172 Strategic Communication in the HIV/AIDS Epidemic

R esults: Given the close link between STIs and HIV, the project focused on measuring levels of STIs among women coming for services and among miners at the mine medical stations. After nine months of the project: l l l

Prevalence of most common curable STIs among women using the service dropped by 85 percent. Prevalence of gonorrhea or chlamydial infection among miners dropped by 43 percent. Prevalence of genital ulcers among miners dropped by 78 percent. (De Coito et al., 2000)

The project averted an estimated 41 HIV infections among women (40 percent reduction) and 196 infections among miners (48 percent reduction) (UNAIDS/WHO, 2000), saving the mining company over US $500,000 in medical costs (De Coito et al., 2000). Lessons Learned: A comprehensive approach was the key to making a significant impact. While the miners themselves had access to information and services, their partners did not, and the latter kept passing infections back and forth. Once the partners were included in the efforts, health improved. The project was a collaborative effort between the mining company, labor unions, and local, provincial, and national health departments (De Coito et al., 2000). Union leaders helped explain the project to the miners and ensure their support. Linkages with the health departments facilitated referrals. Peer educators gained the trust of the community, ensuring broad-based support for the project. To measure the efficiency of the project and convince the stakeholders of the importance of their support, the program tracked a number of indicators such as peer educator referrals, clinic attendance figures, reported condom use, and STI rates among miners and women using services. These specific and measurable indicators were critical in continuing and improving the program. Source: De Coito et al., 2000; UNAIDS/WHO, 2000

Case Study: Tea Parlors for Truckers in India Background: India currently has about five million truck drivers crossing its roads on a daily basis. They spend an average of 10 months per year away from their spouses and family and are often exposed to dangerous and exhausting work (Synergy, 2002). About 75 percent of truck drivers participating in a general survey reported to have had extramarital sex, mostly with sex workers. The researchers also found that a lot of this sexual activity “along the roadside” is unprotected, since many truck drivers consider condoms more a family planning tool, while commercial sex is considered “recreational” sex (UNAIDS, 2001d).

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While 92 percent know about condoms, only 40 percent use them and 27 percent have ever purchased a condom themselves. A seroprevalence survey for the specific project areas revealed that the HIV rate among truckers was quite high (7 percent), as was the HIV rate of truckers and their helpers with a past history of STIs (84 percent). Meanwhile, STI treatment compliance was extremely poor, which can also be a contributing factor to HIV infection (Bhoruka, n.d.a). Audience and Strategy: The Bhoruka Public Welfare Trust (BPWT) established free tea parlors (drop-in centers with clinics) for truckers at five strategic truck stops in India, as part of a comprehensive STD/HIV/AIDS strategy. The major objectives were (i) to reduce STI incidence by providing clinic-based services to address truckers’ resistance to seek effective treatment for STIs, (ii) to reduce high-risk behaviors among truckers through targeted communication and counseling, and (iii) to increase condom use (Bhoruka, n.d.a). The parlors offer truckers a space to relax and entertain themselves without drugs or sex workers. They can drink water or tea, read the newspaper, watch films, listen to music, or play chess or “carom,” a popular Indian game. Cigarettes, matchboxes, and condoms are readily available for subsidized prices inside tea parlors as well as in general stores on the highways and in parking lots. The parlors also provide access to STI and HIV/AIDS counseling and STI treatment performed by medical doctors who collect small fees for medication. The heart of the project, however, is counseling, outreach, and peer education. While truckers inside are initiating discussions with other truckers, peer educators work the parking lots and make referrals for counseling and treatment. About 150 to 200 truckers and peers from other professions who have daily contact with them, such as trucking industry staff, clearing agents, brokers, and “dhaba” (teashop) owners, were trained to distribute IEC materials, demonstrate condom use, and give STI treatment referrals. The parlor caretakers are themselves retired truckers or sex workers. Certificates of appreciation, awards, and small material incentives such as bags and pens help to keep them motivated. The project is now so well established that repeat visitors act as informal “peer educators” and the parlors are in the process of recruiting them for formal peer educator training (Bhoruka, n.d.a; UNAIDS, 2001d). Lately, the project has added a workplace intervention component that targets management and staff in 155 big and small trucking businesses, as well as a pilot component targeting the spouses of the truckers in two villages (Bhoruka, n.d.b). R esults l

l l l

Each parlor/center provides outreach to an estimated 48,000 people a year (at a cost of US $5) and provides health care to about 2,200 patients, half of whom are treated for STIs (UNAIDS, 2001d). A total of 200 persons were trained as peer educators by the year 2000. Treatment of general health problems and STIs in the parlor/centers has increased from 78 cases in 1993 to about 7,000 cases in 2001. The condom social marketing component has shown a steady increase of sales, reaching 104,832 in 2000 with 162 active condom distribution points. (Bhoruka, n.d.a)

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An impact assessment conducted in 1999 compared truckers who had used the centers with a comparison group of people who had not used the centers. The results are as follows: l l l

Visitors of the parlors showed higher knowledge and awareness of HIV/AIDS and STIs. Eighty-two percent of the people who visited the parlors sought medical help compared with 60 percent of those in the comparison group. More than 90 percent of the people who received medical help at the parlors expressed being satisfied, and community members from nearby found the centers valuable and wanted them to continue (UNAIDS, 2001d).

Lessons Learned l l

l l l

Alcohol and other drug use are common at truck stops. Truck stops often lack recreational facilities and hotel rooms that are not linked to drugs and sex workers. A key to the success of the tea parlors was successful partnerships between BPWT and transport organizations and companies, clearing agents and brokers, and other local NGOs and CBOs. Truckers do not easily seek STI treatment from trained health personnel. Trucking companies are not easy to involve in efforts to educate their staff, but they represent one of the most important stakeholders. Peer educators need to be kept at a high level of motivation including supervision, training, and re-training.

Source: Bhoruka, n.d.a; UNAIDS, 2001d

HIV/AIDS in Conflicts and Emergency Situations Rationale There are 50 million uprooted people in the world—whether refugees or internally displaced people (IDP). Of those 50 million, almost 75 percent are women and children. Most of them live in camps where life is a daily struggle, health care and education are scarce, and basic essentials such as food and clothes are practically non-existent (Mehringer, 2002). Populations in conflict and emergency situations are at high risk of contracting HIV. Disturbances in daily routines at the family and community level in turn disrupt relationships, tradition, and social structures. In the absence of traditional norm constraints, and often without their parents, young people are at particular risk. Adolescents with few recreational outlets often become sexually active at a younger age and are at a higher risk of practicing

Reaching Special Audiences 175

risky sexual behaviors. Long conflict engenders a culture of violence, and war erodes traditional practices that promote respect and gender balance in societies (Benjamin, 2001; Benjamin et al., 2001; Save the Children, 2002b). Women and girls are especially vulnerable in such circumstances, and may engage in transactional sex to meet their own survival needs. HIV spreads faster in situations where violence against women and children is extreme and when rape is used as a method of persecution and intimidation (Inter-Agency Standing Committee, n.d.). Because of the fear of retaliation, embarrassment, and shame, women often remain silent, and thus, no action is taken against their offenders (Women’s Commission for Refugee Women and Children, 2000). Furthermore, in refugee and IDP camps, the power is decidedly in the hands of men (Benjamin, 2001; Benjamin et al., 2001). Also present in refugee camps are international peacekeeping and armed forces, regional and local military and police, and staff of national and international NGOs. They can be both susceptible and responsible for spreading the virus in emergency situations. It is, however, difficult to quantify the link between conflict and the spread of HIV and AIDS, because reliable statistical data are not readily available. Even in peacetime, military forces are believed to have much higher rates of infection than the population at large. Some of the Ministries of Defense in sub-Saharan Africa, for example, report average HIV prevalence rates of 20 to 40 percent within their uniformed services and up to 50 to 60 percent in countries where HIV and AIDS were present for longer than 10 years (UNAIDS, 2002a). STD infection rates among armed forces are already two to five times higher than in comparable civilian populations (UNIFEM, 2001). In Cambodia, as an example of a country in conflict, 12 to17 percent of the armed forces were estimated to be HIV positive in 1999, compared with 3.7 percent of the general population (Healthlink Worldwide, 2002). Various factors explain the spread. Most military personnel are in the age group at the greatest risk of contracting HIV: 15 to 35 years (Calderon, 1997). Soldiers live far away from their home and family, thus, they are under constant pressure, especially in war situations, and are in search for recreation to relieve stress and loneliness (UNAIDS, 2002a). Heavy peer pressure also leads to risky (sexual) behaviors. Finally, the military’s professional ethos tends to excuse or even encourage risky behaviors. On the other hand, the presence of military, armed forces, and peacekeepers in refugee camps represents a good opportunity to instill widespread awareness and encourage safer sexual behaviors. Their closed, highly organized, and disciplined settings are theoretically ideal for dissemination of ideas, prevention materials, and health services including VCT (Healthlink Worldwide, 2002). An increasing number of countries have successfully implemented prevention programs within their armed forces, including Sri Lanka (UNAIDS, 2000f), Thailand (UNAIDS 2001d), Botswana, Chile, the Philippines, and Zambia (UNAIDS, 2002a). Since refugee camps are not intended to be permanent, the sustainability of HIV/STI interventions in conflict and refugee settings poses a unique challenge (UNHCR, 2001). Thus, the responses to the HIV and AIDS epidemic in conflict countries have often proven inadequate. Health services are chronically overwhelmed and severely under-resourced, and

176 Strategic Communication in the HIV/AIDS Epidemic

HIV prevention and care have not been a priority. However, the agendas of relief organizations and armed peacekeeping forces increasingly include such issues (IRC, 2003; WHO, 2000b).

Formative Research When designing interventions for populations in conflict and emergency situations, planners must take a number of issues into consideration: l l l l l l l l l l

In what state of an emergency/conflict is the country? Are troops being deployed? Where does the intended audience live: villages, cities, refugee camps? What is the expected length of deployment, battle, or displacement (short-term or longer term refugee settlement)? Have peacekeeping and resettlement started? What is the gender and age composition of the audience? What are the countries of origin and cultural identity for this audience? What are their levels of HIV/AIDS knowledge and awareness? What, if any, health and other social services exist? What media reach the forces, refugee, or IDP audiences? Has any self-organization taken place among them? What are the networks and who leads them? What kind of military hierarchy needs to be consulted and taken into account for interventions with the military, armed forces, and peacekeepers?

Strategic Approaches Strategic approaches need to be tailored to the specific audience that programmers are trying to reach. Military orces, P eacekeepers Military,, Armed F Forces, Peacekeepers Advocacy and P olicy Development: New rules and policies—such as rules for HIV testing, Policy incapacity, and periodic assessments—can influence the environment in which the peacekeeping/military forces evolve. One of the goals of the cooperation between UN Department of Peace Keeping Operations (DPKO) and UNAIDS is to respond to the growing HIV/AIDS epidemic and to mitigate its impact on international peace and security (UNAIDS, 2001e). By providing ongoing training or developing a Code of Conduct on ethics, humanitarian law, human rights and gender sensitivity, this initiative could have a high impact on the social norms within the forces. Prevention Briefings: Lectures, slide shows, and films combined with discussion groups and other activities allow soldiers to comment on what they have learned in a non-judgmental setting. Special prevention briefings should take place before and after troops are deployed

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(i.e., when they are at greater risk of contracting HIV). The military workplace can be an effective venue for addressing the HIV and AIDS issue within a closed setting. Prevention can be an integral part of military education and can also be included in outreach and peer education programs. Peer Education: Peer education aims at training members of the forces to educate, advise, and counsel their peers. Peer educators should be recruited among different ranks and include high-ranking officers. They can distribute condoms and IEC materials, counsel on STIs, and make referrals to health providers (e.g., in bars and hangouts where military personnel gather and spend time). A “buddy system” has proven effective in some countries; soldiers in pairs or in small groups encourage each other to act responsibly (Healthlink Worldwide, 2002). HIV and AIDS Curricula: Curricula for military schools should include knowledge testing and experience exercises to allow for real dialogue. Instructors might have to be trained in more participatory techniques in order to impart knowledge, not only of HIV but also of other social and health issues (Healthlink Worldwide, 2002). Social Marketing of Condoms: In 1996, Population Services International (PSI) started a social marketing campaign in Rwanda to promote the use of subsidized and specially-marketed condoms. They use a mobile unit, radio spots, and a 15-minute Sunday radio show to address themes specific to the military (Calderon, 1997). Peer educators can play an important role in the social marketing of condoms as well. R efugees (F ocus on W omen, Adolescents, and Children) (Focus Women, Advocacy for P olicy Development: Advocacy for policy development in refugee camps should Policy focus on reducing sexual violence and increasing gender awareness. The Ngara camps project in Rwanda—organized by CARE, PSI, and John Snow International—established multiagency crisis intervention teams (CIT) to assist rape victims. NGOs trained refugee volunteers who acted as mediators for the victims and became the first line of response in rape cases, to provide additional assistance (Benjamin, 2001). Print Materials: Posters, brochures, or HIV/AIDS awareness cards are important to reinforce information from other channels. Materials need to respect different reading levels and languages. Peer Education: Peer education activities can take place in youth centers, sports clubs, bars, hair salons, barbershops, and market stands. These activities can be considered an intervention in themselves, since the peer educators are part of a constructive effort and develop new skills as well. Involvement of F aith-based Leaders: The Ngara refugee camp project also involved the Faith-based political and religious leaders of the various communities within the camps. This approach helped in designing the most culturally-acceptable prevention initiatives. Religious leaders

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are highly-trusted and well-respected in their communities. Often in refugee settings, as much as among the forces, they are the only source of psychological comfort available. Entertainment–Education Activities: Using sports, popular skits, and musical performances to promote safer sex and distribute condoms and prevention materials can be very effective, since these events become a “resurgence of community pride” and camp life, one the refugees organized themselves (UNHCR, n.d.; WHO, 2000b). Activities such as soccer tournaments, music contests, and other activities can attract large crowds in camps as well as compounds. Since both groups have few other distractions, these activities present excellent opportunities to address HIV/AIDS, and distribute materials and condoms. Radio usually is a lifeline of information and entertainment for refugee populations and forces alike. For example, Radio Kwizera (meaning “hope”) in Tanzania is based in a refugee camp on the border of Burundi, Tanzania, and Rwanda. Its programs cover various topics, including education, health, women’s issues, water and sanitation, and food distribution. A soap opera addresses issues of AIDS. Staff recruited among Burundian refugees ensure direct involvement of the community and high listenership (Dagron, 2001). Structural Interventions Camp L ayout: A planned camp layout can significantly help to reduce HIV transmission. Layout: Latrines, water, and washing facilities need to be laid out in a way that provides maximum security for girls and women, lessening the risk of sexual abuse and rape. Guarding and lighting such areas can also reduce risk. Vocational and Livelihood P rograms: These program components are of great importance Programs: to develop knowledge and skills, promote responsible attitudes, and support the motivation of youth and women. Income generating projects can help women develop self-esteem and provide them with more resolve to resist coercive sexual advances that offer short-term financial benefits despite destructive long-term health effects. Providing Health and Mental Health Services: Health providers and psychologists are key to a health communication intervention in an emergency situation, as they have direct contact with the population. Health providers should be trained in HIV/AIDS counseling, including VCT where appropriate, confidentiality, and gender and human rights issues to effectively advise their clients. Access to condoms and other contraceptives for family planning is very important. Training of health providers and faith-based organizations in HIV/AIDS specific counseling can increase the use of available services (IRC, 2003; WHO, 2000b).

Key Issues to Communicate l

Promote P revention through the AB Cs: Prevention messages for refugees should Prevention ABCs: be integrated within a broader range of reproductive and family health issues and should include STIs.

Reaching Special Audiences 179 l l

l

l l l

Communicate Special Risks: Awareness of alcohol and substance abuse and the subsequent sexual risk are especially important for military and peacekeeping forces. Target Y oung P eople: Messages for refugee youth should focus on delay of sexual Young People: onset, promotion of a (sensible) future orientation, and building life skills to resist peer pressure. Create Gender A wareness: Messages tailored to both the refugee population and Awareness: armed/peacekeeping forces should address communication and negotiation with sex partners; sexual coercion, violence and rape; and masculinity and male responsibilities (e.g., a real soldier protects women but does not abuse them). Deal Sensitively with MSM: Sex between men should specifically be addressed among the forces, including discrimination and stigma against MSM. Communicate Risk-reduction T echniques in Different Settings: Forces also need Techniques to address risk-reduction techniques in medical and battlefield settings. Link with Health Services: Interventions should include health service promotion including TB, STI, VCT, and FP.

Challenges and Lessons Learned The key challenges are: Priorities: In conflict and emergency situations, HIV and AIDS prevention is usually not a priority. Health personnel often lack skills and resources necessary to provide adequate service to the population. Collaboration and Coordination: A lack of collaboration and coordination between implementing agencies and stakeholders in the integration of HIV and AIDS into existing programs often results in overlapping or parallel programs. Scale: The programs implemented by humanitarian agencies have largely been inadequate in scale and limited in their approaches. They tend to emphasize the immediate vulnerability and transmission without tackling the underlying factors or acknowledging the importance of sexual violence and gender dynamics (Save the Children, 2002b). Sexual Exploitation: Addressing issues such as casual, transactional, coerced and forced sex, and especially sex with minors among armed and peacekeeping troops, is not easy and has to overcome many bureaucratic obstacles. Specific lessons learned include: Materials Development: Development of prevention materials to start dialogues about HIV and AIDS helps to increase awareness among the population and UN and NGO staff. This should include training packages on HIV prevention, including abstinence, reduction of partners, and sexual violence as well as the provision of condoms.

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Participation and In volvement: Programs should be developed in consultation with comInvolvement: munities and international organizations working in camps (e.g., youth teachers, refugee parent–teacher associations, community leaders, and implementing partners). For interventions with the military, senior officers should be involved early on, to ensure a multiplier effect and hold workshops out-of-uniform to help men talk about their experiences more openly (UNAIDS, 2002a). Involving people of multiple age cohorts—adolescents, young men and women, older adults, as well as church leaders, merchants, teachers and farmers— engenders community ownership of the HIV/STI prevention project. Planners should also involve representatives from the military forces (UNHCR, 2001). Children and youth’s experience should be utilized to help guide the design and implementation to reach their peers effectively and reinforce self-esteem, thus enhancing the positive role that young people can play in promoting positive values and healthy lifestyles in complex emergencies. Linkages: Programmers should establish links between educational programs, health services, and community services to increase the reach of their activities. Collaboration: Collaboration between military and civilians can mobilize both communities to approach the HIV transmission issues in tandem. Such collaboration would also focus the attention of the military on protecting the health of the local communities in which they reside, thus increasing the viability and sustainability of community prevention efforts (O’Grady and Miller, 2001). Gender T raining: Gender sensitivity is of utmost importance. Programmers should pay atTraining: tention to differences in the experiences of boys and girls, men and women. Training should include introducing peacekeeping and peace enforcement soldiers, international human rights laws, gender awareness, prevention of gender violence, and HIV/AIDS safeguards (e.g., develop a Code of Conduct).

Case Study: Health of Adolescent Refugees Project (HARP) Background: In August 1997, UNFPA (United Nations Population Fund), Family Health International (FHI), and the World Association of Girl Guides and Girl Scouts (WAGGGS) collaborated to jointly implement the Health of Adolescents Refugees Project (HARP) in Egypt, Uganda, and Zambia. The goal of the project was to bring basic health education to girls and young women living as refugees, thus helping them to make good decisions about behavior affecting their health. The HARP program was designed to overcome the vulnerability of adolescents as they become adults. Such changes are even harder for refugees because of the violence surrounding them. Through an innovative peer education program, HARP also

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developed health awareness, self-confidence, and leadership skills among the women refugees who served as guide leaders. Audiences and Strategy: FHI and WAGGGS developed three adolescent health curricula, trained refugee women as guide leaders, and established dozens of new girl guide groups in refugee communities. The girls in the program were divided into three age levels: 7–10 years, 11–14 years, and 15 years and up. Different topics were addressed according to the targeted age group. Girls of all ages learned how to become effective peer educators. The three curricula (one for each age group) covered the use of drama, music, and dance to deliver messages and taught them how to organize group events. The girls would earn the HARP Badge by participating in learning activities and then completing a flipbook with their own artwork and text on curriculum topics. The flipbook was later used as the girl’s key peer education tool. Recipients of the HARP Badge were then trained to conduct individual and group peer education activities in their communities. Peer educators could earn six bronze, silver, and gold certificates based on the number of contacts made by each peer educator. The health messages had the potential to reach 22,500 adolescent refugees, through the network of peer educators. The girls spread key messages at the community level by performing songs, poems, and roleplays. The communities became stronger and more self-reliant through activities led by the girls. The communities felt a real sense of pride while watching the development of the girls and recognizing the importance of educating them. One of the main strengths of the HARP program was the collaboration between guide groups and the local health care workers. Health workers were trained at the same time as the girl guide trainers in a separate workshop. However, health workers and guide trainers came together to role play situations and plan for community action during the initial workshop. After the launch of the guide groups, the health workers worked with guide leaders, helped to teach the girls and leaders health topics, and welcomed the girls on tours of their youth-friendly services. The program covered a range of health issues: nutrition, prevention of unwanted pregnancy, STIs, hygiene, self-esteem, and physical and emotional changes of adolescence. Both in Uganda and Zambia, HARP gained a high profile with other NGOs, the governments, and UN agencies (UNHCR and UNICEF). By contrast, in Egypt, the program faced more challenges because of the constant turnover in the refugee population and the geographically scattered nature of the camps. R esults: A number of key points surfaced from the evaluation of the project in January 2000 in Zambia, Uganda, and Egypt: l l l l

Parents and community saw the benefits of HARP. The girls became more self-assured, assertive, and confident. Their knowledge on health improved, especially in areas of nutrition, sanitation, personal hygiene, and puberty. HARP girls valued the experience of being a guide.

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As of 2002, the program was continuing in all three countries. In Zambia, the program has expanded to other refugee camps and HIV/AIDS coverage in curricula has increased. In Uganda, UNHRC’s funding allowed HARP to continue in the original site, enrolling more refugees. Sources: Barnett, 2000; FHI, 2000b; Health of Adolescent Refugees Project (HARP), 2002; World Association of Girl Guides and Girl Scouts, n.d.

Chapter 5

Communication for Health and Social Services HIV/AIDS and Services: An Overview As the epidemic spreads, the strategic approach to combating HIV/AIDS must include not only prevention, but also a full range of HIV-related services. The UN guidance on human rights and HIV/AIDS underscores the importance of creating and promoting a supportive and enabling environment for effective prevention, treatment, and care related to HIV/AIDS (United Nations, 1998). The full range of services includes both health and social/support services (e.g., legal services, education and recreation, community development, agricultural and food/nutrition, micro-credit, and income generation). This chapter deals primarily with the provision of health services, and more specifically, the role of communication within those services. The responsibility for establishing and maintaining HIV/AIDS services rarely rests with communication experts. However, communication has an important role to play in creating demand for these services, improving quality of the counseling among service providers, and educating the public to interact more proactively with the service provider when they do seek out these services. To be effective, services must not only contend with the clinical and biomedical characteristics of the disease, but also the socio-cultural factors that affect health behaviors, interaction between clients, and service delivery systems. The most effective programs address both the supply of and demand for HIV/AIDS services. The supply side consists of establishing service at existing or new facilities, training providers, developing service delivery guidelines, ensuring adequate supplies and equipment, delivering these services to the target population, and monitoring the results. The demand side involves developing community ownership and increasing utilization of HIV/AIDS services. Communication plays a pivotal role in this process in five ways: (i) (ii) (iii) (iv) (v)

Increasing awareness of and reducing barriers to the use of the services. Influencing social/community norms to support specific behaviors. Improving the quality of counseling and provider–client interaction at these services. Educating consumers and potential clients to make optimal use of the services. Enabling community and service delivery partnerships for effective service delivery.

184 Strategic Communication in the HIV/AIDS Epidemic

The essential services related to HIV/AIDS include: l l l l l l l l l

Prevention counseling Diagnosis and treatment for STIs Patient and partner notification VCT (including pre- and post-test counseling) Prevention of PMTCT Referral psychosocial and other services Treatment of OIs through drug therapy and nutrition counseling ART, where available and affordable Palliative and home-care services

Two issues that are common to the different types of services are (i) integration and (ii) increasing access to quality services. Integration of services, nevertheless, is often used as a strategy to achieve improved access to services. Integration of Services: A major issue related to service delivery is integration—that is, the integration of HIV/AIDS services into existing health facilities. The alternative is to establish stand-alone facilities for these services. However, as the epidemic spreads, especially in countries with high levels of HIV prevalence, governments rarely have sufficient resources to build new, separate facilities and infrastructure for HIV/AIDS services alone. Moreover, HIV/AIDS-specific facilities label clients who use them as having HIV/AIDS-related problems, and thus may discourage potential clients from seeking their services due to the associated stigma. UNAIDS and WHO recommend full integration of prevention services for STIs and HIV/ AIDS with primary health care services, including family planning and maternal/child health clinics. But they recognize the value of setting up specialized clinics to provide the first line of contact for the most vulnerable groups such as sex workers and their clients, mobile or migrant workers, and young people (UNAIDS, 1999c). These groups may be heavily stigmatized if they use regular services, or they may find regular clinics unfriendly and, therefore, may avoid accessing services altogether. Communication contributes directly to increasing access to quality services across a range of HIV/AIDS services. However, the service delivery infrastructure must be ready to respond to the demand that increasing awareness of these services and promoting their use creates. Increasing Access to Quality Services: The challenge for all HIV/AIDS services is to increase access while maintaining an acceptable level of quality (which will depend, in part, on the resources available in the program). The basic elements required for quality health services (applicable but not specific to HIV/AIDS) include: l l l

Effective management Eupportive supervision A physical environment that allows privacy and client comfort, proper equipment for infection prevention, and safe waste disposal/management

Communication for Services 185 Box 5-1: The Continuum of Care in Action in India YRG CARE, an integrated NGO-run service center for PLHA in India, offers an affordable, clientcentered continuum of care, which serves HIV-positive clients through all stages of the disease, while also addressing prevention and support needs of families and others affected by HIV and AIDS. Services include VCT; psychosocial counseling for clients, couples, and families; nutrition counseling; in-patient and out-patient care, including treatment for opportunistic infections; and home care. For surgical work and other support services, this NGO works together with a broad external referral network. Most recently, YRG CARE added an ART program to the existing services for clients who can afford it. In India, research conducted by YRG CARE, Horizons, the International HIV/AIDS Alliance, and FHI tried to examine the role that integrated care and support models play in meeting the needs of PLHA. A survey was conducted to ask clients of YRG CARE what services were most needed by them. Nearly all responded that in-patient and out-patient care, home care, and counseling services (including VCT, nutrition, and psychological counseling) were very important. YRG CARE believe that management of HIV disease is not just medical. It is equally important to offer counseling and other support—this reflects the true continuum of care. Source: Horizons, 2002d Figure 5-1: The HIV/AIDS Continuum of Care

Source: Narain et al., 1998

186 Strategic Communication in the HIV/AIDS Epidemic l

l l l l l l

An adequate, constant supply of commodities such as condoms, needles and syringes, test kits, safe blood, essential drugs (e.g., antimicrobials, basic painkillers, antifungals, and TB medication), and, if feasible, ARV drugs Effective training for personnel, both pre- and in-service Clear service delivery and counseling guidelines that staff follow Clear referral mechanisms for related services not offered at the facility Strong linkages to the community Monitoring systems to track performance Evaluation to measure impact

This chapter begins by focusing on strategies to increase access to quality services for HIV/ AIDS services in general. In the subsequent sections, we describe the role of communication in each of the different types of services: VCT, PMTCT, ART, and social support/care services for people living with and affected by HIV/AIDS.

Formative Research Following are the types of questions to be considered in developing communication strategies to improve access to quality HIV/AIDS services: l l l l l l l l l l l

What are the current levels of quality and access to services and what plans are in place for improvement? By what criteria do clients/community members judge the quality and accessibility of services? What are clients’/community members’ perceptions of existing quality and accessibility of services? What factors enable or hinder clients’ ability to communicate well with service providers? What are the current mechanisms for community involvement in quality improvement, and what opportunities exist for increasing them? What are the providers’ opinions and attitudes toward the community and clients they serve? How do health service providers treat PLHA? What are the service providers’ attitudes and behaviors towards vulnerable populations such as MSM, sex workers, and IDUs? What factors enable/hinder the service providers’ ability to communicate in a facilitative manner while interacting with clients? What are the formal and informal networks in the community being served? Who are the formal and informal leaders in the community being served?

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Audiences Most communication interventions related to HIV/AIDS services will have one of the following three audiences: l l l

Service providers and program managers from the central level to the facility level, as well as community-based providers (e.g., village health workers). Community leaders, including elected officials, traditional leaders, members of community-based organizations or local NGOs involved in service delivery. Prospective and current clients.

Strategic Approaches Within the health care delivery system, strategic communication can strengthen both the supply of and demand for quality services in a synergistic fashion. Kisubi et al. (1997) have listed a number of factors for positive results: l l l l l l l

Constant flow of information between managers, providers, and clients Positive provider attitudes Communication materials that are explicit about new and existing services Community participation, mobilization, and ownership Outreach efforts that target men and boys, as well as women and girls Reinforcement of partner communication in issues related to HIV/AIDS Education and counseling on parent–child communication

Impact is greatest when an appropriate mix of media is used. For instance, interventions to empower clients to communicate proactively take diverse forms: giving individual or group coaching, providing information via print and audiovisual materials in a clinical setting, or modeling behavior via local or national media. The key strategies fall into three broad areas of intervention: Interpersonal Communication and Counseling (IPC/C): People accessing HIV-related services (e.g., VCT, treatment for STIs) may be under a great deal of psychosocial stress, fearing family or community stigmatization if they are diagnosed HIV-positive. In this context, the quality of client–provider communication is critical. Service providers must avoid judgmental attitudes, keep confidentiality, listen carefully, encourage client communication, respond to questions clearly, and be as supportive as possible. Empathy is one of the strongest qualities a provider can have. Programs can improve the communication skills of providers by giving clear expectations of provider performance for interaction with clients; training providers in client-centered, facilitative communication, both pre- and in-service; providing and training them in the use of job aids to stimulate and reinforce communication on key

188 Strategic Communication in the HIV/AIDS Epidemic

issues; monitoring and providing constructive feedback on their performance; and motivating them by recognizing good performance. The clients’ ability to communicate proactively is an equally important contributor to the quality of client–provider interaction. Programs can empower clients to communicate proactively by informing them of their rights to information and quality services, helping them build their skills to interact effectively with service providers, giving them positive feedback, and providing appropriate client education materials that reinforce their interaction (Kim et al., 2001; Storey et al., 1999). Community Mobilization: Improved communication and partnerships between service delivery staff and community members maximize the possibility of providing sustainable services that best respond to community needs. Community mobilization efforts can play an essential role in improving service delivery. The community should be involved in the design, implementation, and monitoring of local efforts to expand services or assist in improving their quality. For example, the SFPS Gold Circle Quality Teams in Cameroon, Togo, and Burkina Faso organized clinic and community-based activities to increase dialogue between providers and clients. The Quality Teams, made up of clinic staff and community members

Plate 5-1: Gold Circle Quality T eams in T ogo, Cameroon, and Burkina F aso encourage dialogue between Teams Togo, Faso clients and providers: “W “Wee are here to listen to you.” (Credit: Projet Regionale Sante Familiale et Prevention du SIDA)

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recruited from CBOs, were responsible for identifying and resolving problems, organizing community activities, mobilizing local resources, and generating demand for the improved reproductive health services (Traore et al., 2002). Community participation is necessary to build ownership and to leverage local resources, both monetary and other, as well as to improve service quality. A large number of strategies and related materials are available for adaptation and use in community participation processes (de Negri et al., 1998; Howard-Grabman and Snetro, 2003). Such processes often require that health and other community-based workers develop group facilitation skills that help them motivate and guide participation of community members. Mass Media and Branding/Social F ranchising of Services: Radio, television, and other Franchising mass media channels can be powerful contributors to quality improvement efforts for HIV/ AIDS-related services in societies that are open about the reality of HIV and AIDS. Behavior modeling through radio and TV spots, drama, and public service announcements (PSAs) can help shape positive norms and improve service provider performance, as well as increase health seeking behavior of clients at the clinic level (Kincaid et al., 2000; Storey et al., 1999). Programs can generate demand for services in a general manner or through a “branding” approach. The systematic approach to this is called “social franchising.” Branding or social franchising promotes services through a logo or symbol that identifies a particular characteristic responding to a given market niche (e.g., youth-friendly sites, quality services at an affordable price). To use the brand or logo, a given service point must undergo training and usually upgrade its facilities; adopt specific, established standards of practices and procedures; undergo processes of evaluation, certification and accreditation; as well as periodic inspection to ensure it is sustaining quality in order to maintain the franchise. Media campaigns can generate demand for certified sites, as well as public recognition of the provider teams’ accomplishments. In communities where significant stigma still exists, however, program planners should proceed cautiously. Media promotion of STI/HIV/AIDS services may be counter-productive if people elect not to use them to avoid being associated with such diseases.

Key Issues to Communicate Message themes to be included: l

l l l

Motivate community involvement to improve quality services (e.g., using a message such as “Get involved and find out how you can help your health facility earn an award/certification!”). Promote newly certified, quality health services. Explain why demand for quality services of health care providers is to their advantage. Encourage patients to demand good quality treatment and encourage them to be assertive (e.g., using a message such as “Friendly treatment, it’s your right as a patient”).

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Challenges and Lessons Learned Numerous challenges exist in increasing access to quality HIV/AIDS services, including the following: Limited R esource Base: Existing financial resources are often inadequate, and infrastructure Resource and expertise for HIV/AIDS prevention and care activities often limited. Vertical programing and funding present barriers to achieving the greatest impact at the least expense. In many countries, health sector budget allocations and decision-making hierarchies favor secondary and tertiary curative care rather than primary health services. HIV/AIDS prevention and care may not be a priority for such interest groups until the country or region reaches high prevalence. Relative to other areas of health care, there has been less investment in the strategic use of communication such as individual or group counseling and media-based efforts to improve health-seeking behaviors (Askew and Maggwa, 1998). L ack of Coordination and Collaboration: Programs can benefit from effective and sustained coordination among those involved in combating AIDS in different sectors, service delivery systems, and areas of expertise. Similarly, donor coordination can help to optimize the use of funds and avoid duplication of efforts. To date, this type of collaboration has fallen short of the ideal in many countries. Although donors need to remain flexible and responsive to new evidence-based guidance, frequent shifts in priorities disrupt the flow of operations. They affect communication interventions as much as they do the overall health delivery system. Without proper coordination, clients and communities may get mixed messages; training of service providers may include inconsistent or conflicting materials and methods. Complexity of Service Integration: Service integration poses multiple challenges. At the facility level, promotion of HIV/AIDS-related services as part of an integrated service package often remains weak and may be hampered by the constant stigma associated with HIV/ AIDS. When integration does occur, quality of care may suffer due to a lack of skilled and motivated personnel. Some MCH/FP service providers may believe that HIV/AIDS testing, counseling, and care are too sensitive or difficult to handle; others may do a poor job due to the additional work burden placed on them. Service providers often lack the tools necessary to handle an expanded set of health issues. For example, communication materials are often only fear-inducing and/or culturally inappropriate; such material will fail to effectively support quality interpersonal communication and counseling (Askew and Maggwa, 1998; Kisubi et al., 1997). Whereas service integration may compromise service quality, there are some examples of success such as the multi-country pilot of the International Planned Parenthood Federation, Western Hemisphere (Stein, 1996). This program goes beyond the simple addition of STI and HIV/AIDS services to family planning services, providing a full range of reproductive and sexual services. Integration has had a positive impact on the behavior of providers, as well as service-seeking behavior of clients (Becker, 1997). A second example, the Ugandan Yellow Star program (see case study) demonstrates the role of strategic communication in quality, integrated service provision.

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Service Delivery P ersonnel Directly A ffected by the Epidemic: The rapidly growing prePersonnel Affected valence of HIV/AIDS in many countries is having a negative impact on the quality of services. Many service providers, themselves, fear they may be HIV-positive or could become infected through their work or by their sexual partners. If they are not ill themselves, they may need to care for sick family members, raise orphaned children, attend funerals, and grieve personal losses. These pressures are likely to negatively affect their work performance and ability to communicate well with their clients. In a number of high-prevalence countries, service providers are dying of HIV/AIDS in alarming numbers, resulting in a shortage of skilled personnel and the need for costly recruitment and training of new staff.

Case Study: The Ugandan Yellow Star Program Background: Uganda is a country that has successfully reduced HIV prevalence from a high of 15 percent among antenatal clients in 1991 to 5 percent in 2001 (Hogle, 2002). Uganda is integrating STI and HIV/AIDS counseling and prevention with other health services through its public health system. In addition, VCT and psychosocial counseling for PLHA are also available through specialized NGOs in many parts of the country. In the early 1990s, Uganda’s Ministry of Health established a Quality Assurance Department (QAD) to improve the quality of health services through government health facilities. At that time, the vast majority of health services were provided through government facilities that were greatly underutilized. Research indicated that the major reason for underutilization was the poor quality of services. Specifically, most health facilities were understaffed, frequently lacked essential drugs and supplies, and the health workers were often rude to clients. Audiences and Strategy: The QAD instituted a program of routine supervision from the central Ministry of Health to the District Health Services and from the District Health Services to the individual health facilities. To encourage a systematic and supportive approach to supervision, the QAD developed National Supervision Guidelines that include training, instructions, and checklists for supervisors in quality assurance techniques. In 2000, the QAD, together with representatives from selected districts and the Delivery of Improved Services for Health (DISH) Project, developed the “Yellow Star Recognition and Reward System” for health facilities that met 35 basic standards of quality. The Yellow Star program has been introduced in 12 of Uganda’s 56 districts and, with plans for expansion to the remaining districts by the end of 2004. Every quarter, supervisors assess each health facility against 35 standards of basic quality and assist health facility staff to develop plans to improve services. Health facilities that meet all 35 standards for two consecutive quarters are awarded a “Yellow Star” in a highly publicized ceremony. There are six categories of standards: (i) infrastructure and equipment, (ii) management systems, (iii) clinical services, (iv) infection prevention, (v) IPC/C, and (vi) other in-clinic communication and client services.

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The program encourages community involvement in quality improvement efforts through a combination of electronic, print, and interpersonal communication. Posters, radio spots, flyers, and newsletters encourage community members to get involved and find out how they can help their health facility earn an award. Health Unit Management Committees, made up of community leaders, receive orientation to the program and its 35 standards. They also participate in feedback sessions during quarterly assessment visits and organize award ceremonies when their health facilities earn a Yellow Star. The communication strategy to support this effort has multiple phases and addresses three priority audiences: health workers, their supervisors, and community members. The first phase focuses on orienting these audiences to the Yellow Star program and stimulating their active support and involvement. The second phase is designed to improve the quality of health care by reinforcing standards that are frequently missed, and educating health workers about new Ministry policies and guidelines. The third phase publicizes the improved quality of services at health facilities that earn the Yellow Star, and encourages the maintenance of standards and utilization of these facilities. To encourage quality interpersonal communication between health workers and clients, the QAD has instituted the Health Worker’s Pledge and the Star Health Worker award. All health workers in each health facility are requested to sign the pledge that says, “I am here to listen, I am here to care, I am here when you need me, and I am here to make the health centre work.” The pledge hangs in the facility waiting area. Supervisors also award coffee mugs and certificates to health workers who exhibit caring and helpful attitudes toward clients. The coffee mugs are printed with the health workers’ pledges and the words “I’m a Star.” R esults: Since the onset of the program in September 2001, the quality of services has improved greatly. Whereas baseline assessments conducted in four districts in October 2001 found that performance of health providers met only 46.5 percent of the 35 standards, by April 2002, the average score had increased to 71.7 percent. The areas of lowest performance during initial assessments were infection prevention and interpersonal communication. Both of these categories have improved markedly since the program’s inception. In July 2002, the first two health facilities received Yellow Star awards. Lessons Learned l l l l

The program has been most successful in districts where the political leaders actively support and participate in the Yellow Star Program. The program requires a good deal of functional supervision and in-service training systems. The 35 standards have not included any related to community-based services. Further work needs to be done to develop easily measurable standards for outreach services. More emphasis should be placed on internal self-assessments and quality improvement planning by health facility staff who can call in an external team to conduct Yellow Star assessments when they have reached all 35 standards. This would reduce the number of assessments that supervision teams are required to conduct each quarter.

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Plate 5-2: The first phase of Uganda’s Yellow Star program stimulated active community support and involvement. (Credit: Delivery of Improved Services for Health Project) l l

More work needs to be done to clearly define the ways in which communities can become involved in quality improvement activities for the health facilities. The current 35 standards are not adequate to assess all departments of district, regional, and national hospitals; basic standards for these hospitals need to be prepared.

Source: DISH II, 2002

Increasing Use of Voluntary Counseling and Testing (VCT) Rationale Voluntary counseling and testing (VCT) has proven to be a cost-effective way to reduce risky behaviors (Voluntary HIV-1 Counseling and Testing Efficacy Study Group, 2000). By

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undergoing VCT, people who want to know can find out their HIV status. Well-designed VCT services help individuals make informed choices about whether or not to get tested, while ensuring confidentiality. The provision of VCT services is based on the principle that everyone has the right to know, or not to know, his or her HIV status (Brown et al., 2001b). The specific objectives of VCT are to: (i) detect infection early, (ii) assist infected individuals to remain as healthy as possible, for as long as possible, by accessing available care and treatment services, (iii) educate infected individuals to avoid infecting others, (iv) help uninfected individuals to remain as such through the maintenance of safe behavior, (v) assist individuals in life planning issues, and (vi) assist individuals and couples in decisions about having more children and decreasing the chance of infecting infants. VCT services take several forms consistent with local resources and needs. The models include freestanding services, VCT integration into government primary health care services or public hospital settings, mobile/community outreach, private sector (private hospitals, private practices and workplace clinics), and private homes (WHO/UNAIDS, 2001). Integration of VCT with other services provides clients with greater anonymity and decreases stigmatization. However, for young people, youth centers may be the preferred point of access (UNAIDS, 2000d). Ideally, VCT services should routinely obtain informed consent, and they should assure clients of anonymity and confidentiality. With the advent of rapid testing, clients can obtain their results within hours, and in some countries, even in 30 minutes. Where rapid tests are not available, they must return at a later date and, consequently, many may be lost to follow up. Although procedures differ by VCT facility and the availability of different testing methods, most provide some type of post-test counseling, especially for those who test positive. Box 5-2: VCT in A frica Africa VCT in Africa has been traditionally offered at integrated sites within health facilities or as freestanding centers operated by NGOs. Most recently, a third model has emerged: community-based VCT services offered at commonly frequented locations within the community (e.g., churches, youth centers, or a chief’s compound). Community self-help counselors carry out pre- and posttest counseling, while providing two rapid blood tests on site. The client receives the test results after 20 minutes and, if needed, ongoing support. A pilot study in a large slum in Kenya showed a rapid increase in utilization of this type of service. Source: Marum et al., 2002

VCT cannot operate in isolation. It is a vital point of entry to other HIV/AIDS services including: overall counseling for prevention; psychological, legal and economic support; clinical management of HIV/AIDS-related opportunistic infections, including tuberculosis control; and the prevention of mother-to-child transmission (PMTCT). Wherever available, VCT providers should refer clients to these services. VCT has been a key element of HIV/AIDS prevention and care programs in the United States and other developed countries since the mid-1980s. However, in many countries, VCT has been slow to expand, mainly due to limited technical capacity on testing technology, questions regarding how to establish systems, funding, and sustainability. The last five

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years have seen an increase in support for VCT services in developing countries due to the introduction of rapid tests, the development of training curricula, and advances in access to HIV/AIDS treatment. These factors have made VCT a feasible intervention for low-resource nations. New studies in Africa document the value of VCT for prevention, specifically a 43 percent reduction in unprotected sex among those who received VCT, as well as the cost-effectiveness of the strategy (Voluntary HIV-1 Counseling and Testing Efficacy Study Group, 2000). Other studies show dramatic increases in demand for VCT when the services are made accessible, affordable, and secure to those people who want to know their status. National, household-level surveys in Kenya, Tanzania, and Zimbabwe have shown that around 60 percent of adults want to know their status, but only 15 percent or less have access to VCT. Barriers to greater use of VCT include limited awareness of the psychological benefits of VCT, lack of access (cost, distance), and poor quality of services, including lack of confidentiality (USAID, 2000). Box 5-3: The Benefits of VCT For the individual, VCT: l l l

Empowers uninfected people to protect themselves from HIV. Assists infected persons to live positively and to protect others from HIV. Helps an HIV-positive person take steps to delay the onset of AIDS.

For couples and partners, VCT: l l l

Helps them plan for the future (marriage, further pregnancy, relationships, children’s future, financial and property arrangements). Enhances faithfulness. Motivates individuals to avoid infecting partners.

For the community, VCT: l l l l l l

Helps change the image of HIV and AIDS from one of suffering and death to living positively with HIV. Generates optimism as the majority of people test negative. Reduces stigma and enhances the development of care and support services. Reduces new and further transmissions. Facilitates the use of anti-retroviral drugs, if available, for those who test positive. Becomes a link to treatment and other care and support facilities.

Sources: CDC, 2002; Makwaya and Badru, 2001

Formative Research Formative research is needed in both establishing VCT services and in generating demand for them. The types of questions to be addressed may overlap for the two purposes, but some key questions follow (UNAIDS, 2000h):

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Esta blishing VCT Services Establishing l l l l l

l l l l

What policies or guidelines are in place for VCT? What models of VCT service delivery are in place or can be established? How many sites exist and where are they located? What type of tests are to be used? What is the range of services provided by the sites ( e.g., counseling and/or testing, ongoing counseling, post-test clubs, treatment) and how are the VCT services linked to other care and support services in the community? How many clients visit the sites per day/week/month? What are their ages, gender, marital status, level of education, and place of residence? Do clients pay for testing and, if so, is the service affordable to most? Who are the counselors (e.g., professional counselors, volunteers/peers, PLHA, nurses, doctors)?

Generating Demand for VCT Services l

l l l l l l l

What is health workers’ and clients’ knowledge of VCT? (e.g., What is involved? Who is in most need of VCT? How does it benefit individuals and couples? Where are services located and how much do they cost?) What are health providers’ attitudes towards client education about HIV/AIDS and referrals for VCT? How does the intended audience get information about health matters in general and VCT in particular? What perceptions does the community have about VCT services, including confidentiality? Do people know: Where to go to get tested? What it costs? What is required? What the procedure will be? How long it will take? What reasons do people give for getting tested? Why are people reluctant/fearful of getting tested? Are people who have used VCT sites satisfied with the service they received (e.g., treatment by personnel, waiting time, quality of the counseling)? Are youth required to have their parent’s consent and, if so, to what age?

Audiences In low-prevalence countries with concentrated epidemics, the first priority is usually to provide VCT to those groups most at risk, such as sex workers and their clients. In high prevalence countries, services should ideally be accessible to the general public. However, funding restrictions are likely to result in targeting of scarce resources to the most vulnerable groups for the foreseeable future. These groups include the following:

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Sex W orkers and their Clients: The frequency of unprotected sexual activity of sex workers Workers and their clients put them at high risk for STIs, including HIV/AIDS. This fact, as well as the increased awareness among many sex workers and their professional interest to remain uninfected, explains why this group has become a prime audience for VCT. Young P eople: Many countries with an emerging HIV/AIDS epidemic consider young people People: as a priority group for their interventions because their behavior will largely define the future of the epidemic. Moreover, the vast majority is sero-negative as they reach puberty, and their behaviors are not as well-entrenched as those of older adults. Soon-to-be-married Couples: Some countries (notably Uganda and Tanzania) legally require and strongly encourage young people intending to be married to get tested for HIV. In others, young people themselves seek this out for their own protection. Some families make it a condition for marriage. Pregnant W omen: In order to prevent the transmission of HIV to their unborn children, Women: this group may be particularly motivated to seek VCT, especially if they suspect they are HIV-positive. As a result, the number of health facilities that integrate VCT into prenatal testing is on the rise (See next section of this chapter). The groups to involve will depend on local factors, best determined through formative research and epidemiological data. However, program planners must avoid inadvertently stigmatizing and marginalizing specific groups in trying to reach those most in need of service.

Strategic Approaches Communication plays a vital role in VCT services in three ways: (i) improving the quality of counseling at VCT facilities, (ii) creating demand for VCT, and (iii) creating a supportive environment for VCT. This section outlines the types of activities corresponding to each area of action. Improving the Quality of Counseling at VCT F acilities Facilities Pre- and P ost-test Counseling is a crucial component of testing that distinguishes VCT Post-test from purely diagnostic HIV testing. If done correctly, pre- and post-test counseling offer a unique one-on-one opportunity for counselors to give HIV/AIDS information, as well as prevention messages that have the potential to change clients’ behavior. A client-centered counseling approach is needed, including personalized risk assessment, development of a personalized risk reduction plan, and referrals consistent with the client’s test results. Research indicates that HIV-positive and HIV sero-discordant couples (couples with different HIV status) are more likely to reduce unprotected sex and increase condom use after testing than are HIV-negative and untested clients (Weinhardt et al., 1999). However, counseling often receives inadequate attention. A recent study in South Africa revealed that 79 percent of previously tested respondents did not receive pre- or post-test counseling (Van Dyk, 2002).

198 Strategic Communication in the HIV/AIDS Epidemic

Tools for improving the quality of pre- and post-testing counseling include: l

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Materials for T raining of T rainers and Service P roviders: Modular curricula and Training Trainers Providers: manuals can cover basic education, testing and lab procedures, pre- and post-test counseling support, and performance standards, as well as exercises for participants at different knowledge levels. Training videos deliver specific content in a consistent manner to participants in different sessions. Where video is not an option, flip charts can be designed to convey the same content. Take-away printed materials allow trainers to retain key learning points after the sessions. One useful component of a training curriculum is the tour of a VCT service to observe a counseling session and lab testing procedures. Video/P osters to Support Client Education in clinical settings are very useful to ideo/Posters stimulate client–service provider interaction. In a sense, they will induce “smartclient” behavior, demonstrating the standard of services a client should expect from service providers and what to expect through the process of testing and counseling. Client T ake-home Educational Materials are recommended to support the above Take-home learning and counseling process and reinforce return visits for follow-up actions, including referrals.

Program staff can effectively convey routine information about HIV/AIDS, testing procedures, and risk reduction in group-counseling sessions or via video to save time and resources. However, individual pre- and post-test sessions are crucial to allow the client time to ask questions, especially after the tests. Such sessions may also involve counseling of couples. Counselors are not the only staff who need training in interpersonal communication. Unsympathetic or non-supportive medical technicians or reception staff can drive away potential clients. They must be trained to interact with clients in a sensitive manner and to maintain confidentiality. Creating Demand for VCT Services Health W orker R eferrals: Health workers are often the best promoters of VCT when they Worker Referrals: discuss it with their family planning, STD, and antenatal clients, and any in- or out-patient clients who are at risk of HIV infection or show possible signs of AIDS. Referring clients is often difficult for health workers, particularly in settings where people with HIV/AIDS are stigmatized. Health workers need training and supervised practice to actually integrate education and referrals for VCT into client counseling sessions. Many health workers fear their clients’ reactions if they suggest VCT. Yet, counseling and referrals by health workers are one of the most effective triggers for utilization of VCT services. Mass Media: Mass media have potential for providing key information (e.g., what VCT is, what it entails, where to get it) and increasing awareness of VCT among large segments of the population. Moreover, messages via TV, radio, and print media can help address barriers to VCT use, such as questions about confidentiality. Many programs are using a recognizable

Communication for Services 199 Box 5-4: Quality of VCT Services The quality of services is a key factor for their utilization. UNAIDS developed a set of VCT Evaluation Tools, which include indicators to measure the quality of services. These were evaluated in four service sites in Malawi. The data collection consisted of interviews with VCT managers and counselors, exit interviews with clients, and observation of counseling sessions. The findings identified several problem areas that became the focus of quality improvement: counseling sessions that were rushed at peak hours, counselors who provided incorrect information, uncomfortable waiting areas and disorganized client flow, inadequately trained volunteer counselors, and lack of regular support and supervision for counselors. The UNAIDS Best Practice Key Material is available at http://www.unaids.org/publications/documents/health/counselling/Tools.pdf Source: Chimzizi et al., 2002; UNAIDS, 2002d

symbol or brand to identify HIV testing services. Incorporating this symbol into mass media messages on VCT helps to unify the program in the minds of the intended audience. However, VCT should not serve as the primary channel for conveying risk-reduction messages. Rather, testing programs need to be developed hand-in-hand with other communication activities focusing on information and risk-reduction skills. This is particularly true for youth, who benefit more from long-term, individual support (Haymes et al., 1992). Peer Education: This approach has strong potential, particularly for the youth. Results from an exploratory study in Kenya and Uganda showed that peers are a key source of information about HIV testing for young people, suggesting there is good potential for using peer networks to promote youth-friendly, VCT services. Moreover, the youth recommend HIV testing to their peers, whether or not they have been tested themselves, which reaffirms testing as an accepted means of risk reduction (Horizons, 2001b). Free Days: Free VCT days and “two-for-one” days to encourage couple testing are creative marketing strategies that provide potential clients with an additional incentive to act. Typically these days coincide with events such as World AIDS Day, Valentine’s Day, and International Women’s Day. Community Outreach: Outreach for VCT may involve a range of activities such as drama, songs, and community rallies. These can be particularly effective in promoting VCT because entertaining presentations draw attention to the topic and the participatory format engages people in the subject. Moreover, the face-to-face interaction allows participants to ask questions and clarify doubts. Partnerships with PLHA: PLHA can be powerful partners in promoting VCT’s benefits. In Uganda, a VCT initiative was founded in memory of Philly Lutaaya, a popular Ugandan singer who “went public” with his HIV-positive status. Thirty-five HIV-positive members of this initiative were trained to give testimonials at public events. They also produced advocacy materials, including a collection of experiences of PLHA called “Stepping Out in the Open,” a compilation of the most frequently asked audience questions, and a newsletter entitled “Today it is Me, Let it Be Nobody Tomorrow” (UNAIDS, 1999d). In Zambia, the Kara

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Counseling and Training Trust used a similar approach: PALS, the “Positive and Living Squad,” a group of youth open about their HIV status. They provide support for people following VCT and deliver HIV education in the community, workplaces, and schools. PALS also has an advocacy role in promoting the rights of PLHA by challenging stigma and denial (WHO/UNAIDS, 2001). Faith-based Groups: Promoting VCT through places of worship and religious leaders has become increasingly popular. In countries where HIV testing before marriage is common, the church has a clear role to play. Many church groups are also involved in care and support services for PLHA and their families. Training religious leaders and church groups to talk about HIV and AIDS and the benefits of VCT can be a highly effective communication strategy. Creating a Supportive Environment for VCT Advocacy Materials: As part of the advocacy efforts outlined in Chapter 3, programs may produce videos, print materials, or other support materials aimed at decision-makers for VCT policy development. Such materials should address issues of interest to this group, such as cost-effectiveness analysis. Key messages can be replicated in pocket-sized print format, to provide them with talking points in support of VCT. Post-test Clubs and Community Outreach: Post-test clubs offer ongoing support to clients, regardless of their HIV test results. In Uganda, the AIDS Information Center has post-test clubs that offer members support as well as a variety of services: counseling, HIV/AIDS education, medical services such as family planning, STD management, food distribution, and recreation. Post-test club members are also peer educators who educate family members and friends about VCT and HIV prevention. Linking with Care: Many NGOs and service organizations support home-based care of PLHA. The organizations that provide VCT, especially those with post-test clubs, can link HIV-positive people with such services so they can receive care and support as their disease progresses. Such support may include legal assistance, micro-credit and income generation, access to education, health services, and recreation. However, in general, it is recommended that VCT service organizations do not try to take on this kind of long-term support service because it will dilute their efforts in VCT. Linking with P revention: VCT forms part of a strong prevention strategy. Even in the Prevention: highest prevalence countries, the majority of sexually active people are HIV-negative, and receiving negative results motivates them to stay negative. Post-test counseling and posttest club activities are two vehicles to this end. As one young Ugandan stated: I joined the Post-Test Club and this changed my life. Here I have found many new friends living healthy lifestyles. Most people think that the Club is only for those who are HIV-positive, but it gave me support to maintain my HIV-negative status. I am

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busy with the drama group and spend my free time with other members, playing board games and attending educational talks. —Richard Kigenyi, 21 years old, Uganda (UNAIDS, 1999d). Single people and couples who test negative should receive in-depth counseling on how to stay negative. Negative results might otherwise be seen as positive reinforcement for having unprotected, casual sex. Such people need to understand that they are not invulnerable and have just been lucky, but that their luck will likely run out if their behavior does not change. If HIV-negative people leave VCT facilities without post-test counseling or without joining a post-test club, an important opportunity has been lost.

Key Issues to Communicate Clearly Explain VCT and its Benefits: Promotion campaigns and HIV/AIDS educational materials should explain what VCT is and what people can expect (e.g., location of VCT sites, an explanation of the test procedure involved, expected accuracy of results, and what results mean). Promote Concept of R esponsibility to Get T ested: Messages need to promote acceptance Responsibility Tested: of VCT as something everyone should do as a responsible lover, husband, and partner, especially in high prevalence countries. They should encourage acceptance and discourage discrimination against PLHA. To this end, PLHA can be highly effective in conveying such messages. Emphasize Confidentiality: Communication programs need to emphasize confidentiality of VCT to gain people’s trust in using the service. Care must be taken in the use of specialized VCT services and promotional symbols, lest they lead to stigmatization of clients who access the service. Communicate Risk for Y outh: In communities where youth do not feel that they are at Youth: risk, messages should emphasize behavior that puts young people at risk of becoming infected, suggesting that the youth who perceive themselves at risk should get tested.

Challenges and Lessons Learned The following are some of the major challenges for VCT services in general (not specific to communication): Importance of High-level P olitical Support: A successful VCT program needs support Political from the highest level of government, and it must figure prominently in the national HIV/ AIDS control strategy. Where government officials are hesitant, high level advocacy becomes important. Once established, VCT may become a catalyst for the development of a comprehensive HIV prevention and care program.

202 Strategic Communication in the HIV/AIDS Epidemic Box 5-5: Increasing Demand for VCT In Tanzania, JHU/CCP, with support from USAID, developed an HIV/AIDS program for young people called Ishi, which means “live” in Kiswahili. The program’s objectives are to increase perception of young people’s personal risk of contracting HIV/AIDS; to increase knowledge of the two ways in which youth can prevent infection: abstinence or condom use; and to encourage youth to seek VCT services from youth organizations. Messages included the fact that youth never know if someone is HIV positive just by looking at him or her (“You Can’t Tell by Looking”) and an encouragement to be responsible in relationships (“Play the Game Right”). These messages were disseminated through a variety of mutually reinforcing mass media and community-level activities. In Uganda, the Delivery of Improved Services for Health (DISH) project (1999–2000) promoted VCT with the “Take Control of Your Life” campaign with men as the primary audience. The campaign provided the general public with correct information; motivated men to get tested together with partners; encouraged testing prior to marriage or pregnancy, or if worried; and suggested using test results to plan for the future. Vehicles to disseminate these messages included posters, radio, video, newsletters, market rallies, road shows, launching ceremonies, soccer matches, and bicycle rallies. Sources: DISH II, 2000; JHU/CCP, 2001

Adequacy of the R eferral Network: VCT cannot operate successfully in isolation. It relies Referral heavily on referrals to other care and support organizations and medical facilities for followup counseling, care, and treatment. In many countries, referral services are severely limited, and promoting VCT can put a strain on already overburdened facilities. Partner Involvement: Although clients should be given the option of notifying partners themselves, in practice this has proven difficult. Fears of abandonment or abuse, as well as the difficulties of talking about HIV/AIDS issues, often deter people from telling their partners. Programs should encourage and promote VCT for couples. Couple pre- and post-test counseling has significant benefits for addressing risk assessment and risk reduction planning, in particular for women in countries with substantial gender inequity. In addition, it is wellacknowledged that targeting couples is cost-effective (Maman et al., 2001). Integrating VCT into Other Services: Integration can be difficult, especially in busy, understaffed health facilities. In such settings, VCT is often given low priority and is not adequately implemented, especially with regard to confidentiality. Laboratory technicians may not be available. One possibility is to train nurses, midwives, or clinical officers to do both lab tests and counseling, as has been done in Uganda. This kind of innovation and flexibility in roles is important because any delay or barrier to VCT will drive potential clients away and they may never return. Scaling up VCT Services: Very often VCT services start small and stay small. The challenge is to find the method and means to expand services more rapidly to reach both urban and rural communities and then to sustain such expansion. Other elements of HIV/AIDS prevention and care programs may be competing for resources, or the number of qualified people needed to rapidly set up systems may be inadequate.

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Challenges that Directly R elate to Communication on VCT Include the F ollowing: Relate Following: Formative R esearch on Motivation: Although some message content is applicable across Research countries, formative research is important for adapting information and skills building activities to specific settings. For example, one country intended to promote VCT use by emphasizing that the majority of people test negative. Yet focus groups revealed that such a message might inadvertently imply that people do not need to worry about their HIV status. Need for Y outh-F riendly VCT Youth-F outh-Friendly VCT:: Many young people are reluctant to use VCT services due to existing policies, such as the requirement for getting parental consent or fear of a breech in confidentiality. Also, youth may not be aware of services or may avoid them because they are not youth-friendly. Health systems and health service providers have been slow to address the specific needs of young people, and it may be difficult to train older service providers, who are deeply entrenched in their ways, to change their attitudes towards young people who seek services. Motivation for Getting T ested: One of the greatest challenges is the (admittedly underTested: standable) lack of motivation for people to know their status. Especially in resource poor environments where ART is not available, it is not easy to communicate the immediate benefit of knowing one’s status. The fear of stigmatization and a general feeling of helplessness on how to deal with HIV infection form a stronger barrier that keeps people from using the services. Quality of Counseling: Effective counseling requires confidentiality and a client-centered approach that should include risk reduction planning and skills building, well-trained and routinely supervised staff, and a well-defined and active referral system for both HIV-positive and HIV-negative individuals who are at high risk. Due to poor planning or inadequate funding, clinic administrators often give counseling low priority, compared to other medical services. Counselors often receive inadequate training and little supervision or support. Clients need to understand complicated issues such as the “window period” (delay in positive results after exposure) or the meaning of “discordant couples,” sometimes confused with inaccurate test results. National governments and donors should therefore be encouraged to develop national VCT counseling guidelines (Walkowiak and Gabra, 2002). “Burnout”: This condition is common among counselors because of the emotional nature of work and the frustrations experienced due to lack of support services and treatment. Since service providers are a part of the community, they are not immune to the fears and burdens caused by the HIV/AIDS epidemic. Added to the lack of trained staff, many counselors have other jobs that take priority over counseling, or there is simply no time provided for indepth pre- and post-counseling. Counselors need support, refresher training, and periodic breaks to remain effective. In-service training is rarely built into programs. These factors have a negative impact on the quality of the service that, in turn, can decrease demand (Kiragu, 2001). Stigma, Discrimination, and V iolence against W omen: Unless VCT is carried out in a Violence Women: comprehensive manner, it may increase stigmatization of those accessing services and increase

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discriminatory behavior towards them. Demand for VCT may remain low where HIV/AIDS education messages focus on fear, equating HIV/AIDS with death, or with promiscuity. In order to increase VCT demand, messages need to combat stigma and emphasize the benefits of testing together as a couple. Women are at risk, especially if their husbands or cohabiting partners are not part of the process. One partner’s behavior may be responsible for positive test results, but he or she may use the disclosure of results for an opportunity to “blame the victim” and deny responsibility. Many HIV-positive women become victims of domestic violence in such situations (Maman et al., 2001; Maman et al., 2002). If a couple goes together for VCT, they will learn their results together. During counseling, they will be encouraged to deal with their feelings of responsibility, blame, and anger.

Case Study: New Start in Zimbabwe Background: In Zimbabwe, an alarming 25 percent (UNAIDS, 2003) of the sexually active adult population is HIV positive. Here, an innovative and urgently needed social marketing program, the New Start Voluntary HIV Counseling and Testing Network, is aiming to encourage healthier sexual behavior and prevent the spread of HIV/AIDS. In an effort to respond to the dire situation, the Zimbabwean Ministry of Health and Child Welfare’s National AIDS Coordination Program (NACP), and Population Services International (PSI) with support from USAID/Zimbabwe, are working together to manage a national VCT program. The New Start network, launched in early 1999, integrates VCT services into existing health service delivery institutions, such as public clinics and hospitals, non-governmental organizations, and private health facilities. The partner organizations are trying to identify the best way to deliver VCT services, and they have recently tested the newest approach, a direct walk-in clinic that only provides VCT services. Audience and Strategy: Clients at each site receive the same high-quality, affordable services, which include counseling sessions covering risk reduction tailored to each individual. New Start staff are trained in NACP/PSI’s standard protocols and procedures to provide on-site, state-of-the-art rapid HIV testing, confidential pre- and post-test counseling, and referrals (when appropriate) to community support groups. By establishing the centers at institutions that already provide other health-related services, the VCT network helps reduce the stigma of seeking an HIV test. Messages promoting VCT sites are based on consumer research that pinpoints motivations for and barriers to the use of VCT services. In addition to television, radio, and print mass media advertising, New Start spreads the word about VCT services and the benefits of knowing one’s HIV status through an organized IPC strategy that includes drama groups in each community with a New Start center. Communication campaigns focus on encouraging sustained behavior change.

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New Start VCT services are targeted to specific groups, including young couples, adolescents, commercial sex workers, transport industry workers, and other mobile populations. By the end of 2001, the program had opened 10 sites serving a total of 18,973 clients throughout the country (SAfAIDS, 2001). R esults: An evaluation of the different delivery models has shown that clients prefer VCT services in public sector clinics because the purpose of their visit remains confidential. However, VCT services put an additional burden on already overworked personnel. New Start’s promotional activities have resulted in a fourfold increase in client visits to nine New Start VCT sites since they were opened. The most common reason for testing is curiosity (66 percent), followed by marriage (14 percent). Males constitute 56 percent and females 44 percent of New Start clients. To date, 28 percent of female clients have tested positive, compared to 16 percent of males (largely because females are infected earlier than men through sex with older men). Clients heard about VCT mainly through the mass media (64 percent), and other sources of information including health workers (16 percent), friend/ family members (10 percent), community mobilizers (6 percent), and partners (4 percent). Lessons Learned l l

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The strategic use of mass media is effective in reaching out to people about VCT. Community mobilization is essential in order for community members to accept and understand the benefits of VCT, as well as to encourage follow-up counseling. The program is exploring various strategies on how to increase involvement, for example, through community support networks and partner notification. Staff burnout is common, because of the increasing number of clients attending the clinics. The New Start sites are therefore developing a program of support and are exploring training of lay counselors and/or peer educators. Increased promotion of VCT can result in an overwhelming response; thus, VCT sites need to be ready to respond to this increased demand.

Box 5-6: VCT in India P rofits from New Start Profits Start,, Zimbabwe The first VCT clinics in India were launched in Mumbai in August 2002 as part of a large HIV/ AIDS prevention behavior change program called Operation Lighthouse, working in 12 port cities across India. PSI-India is implementing the project with support from USAID. City-based mass media and community mobilization programs have been used to promote these services and a hotline counsels an increasing number of callers on where to get tested. The two clinics called “Saadhan” (meaning “key” or “solution”) provide high-quality VCT and STI services. They are strategically positioned at two prominent trucking points. Designed for highly vulnerable groups such as truckers and sex workers, the service charges are set to be affordable. The project team has ambitious plans to open up Saadhan clinics in six more towns over the next eight months. The lessons learned from the New Start experience in Zimbabwe have played a significant role in jumpstarting the program. Source: PSI, 2002a; PSI, 2002b

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More youth-friendly initiatives are needed. Establishing effective linkages with identified support organizations is essential for the success of VCT.

The New Start system has now been adapted to the Indian context (see Box 5-6). Source: PSI, 2002a; SAfAIDS, 2001

Prevention of Mother-to-Child Transmission Rationale The risk of mother-to-child transmission (MTCT) is estimated to be 5 to10 percent during pregnancy, 10 to 20 percent during labor and delivery, and 10 to 20 percent during breastfeeding as typically practiced in developing countries (De Cock et al., 2000). Trials in the prevention of MTCT (PMTCT) began in the 1980s, but it was not until 1994 that researchers succeeded in demonstrating a 67.5 percent reduction in HIV transmission through the administration of a long course of an anti-retroviral (ARV) drug called Zidovudine (ZDV) to the mother during pregnancy and to the child for six weeks after birth (Connor et al., 1994). However, the costs of ART made it too expensive to use in most developing countries. In 1998, a trial in Thailand demonstrated that a short course of ZDV could reduce MTCT by 50.1 percent (Shaffer et al., 1999). Two years later, researchers demonstrated that a cheaper and less complicated ARV, Nevirapine, was equally effective and new evidence emerged that the drug did not build resistance, as previously thought (WHO, 2000c). Recent reductions in prices, donations, and local manufacture of ARV drugs have made them more accessible to pregnant women in developing countries, usually through PMTCT pilot programs. When PMTCT programs began, many debated the ethics of concentrating on the survival of children while not providing ART for the mother, thereby producing more orphans. Although approximately one-third of HIV-infected children in developing countries die within one year (Dabis et al., 2000), the fact remains that many children live with HIV/AIDS up to five and sometimes beyond 10 years. With the advent of more affordable ARV drugs, it is now sometimes feasible to treat both mother and child, or both parents and child. In fact, PMTCT pilot programs are now recognized to be useful entry points for an expansion of ART to PLHA. PMTCT programs are starting in many countries, thanks to support from governments, WHO, UNAIDS, UNICEF, and donors such as USAID. Many programs take a variation of the “Four-Pronged Approach to PMTCT,” outlined in Box 5-7. However, PMTCT programs offer no “magic bullet” for the interruption of HIV infection. When research trials for PMTCT were turned into pilot programs in the late 1990s, it soon

Communication for Services 207 Box 5-7: A F our-P ronged Approach to PMTCT Four-P our-Pronged Primary P revention Prevention omen of HIV in W Women and Y outh Youth l

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BCC (including life skills education, couple counseling) Prevention and treatment of STIs Condom promotion and provision

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Contraceptive promotion, including condoms Counseling and services for pregnancy termination

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Comprehensive MCH service: antenatal, postnatal, and child health services Optimal/safe obstetrical practices VCT and ARV prophylaxis Counseling and support for safe infant feeding

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Care and support with community participation and mobilization Communication program to reduce stigma in the community

Source: Adapted from Preble and Piwoz, 2002; UNICEF, 2002b

became evident that social factors had a very large role to play in successful implementation. Communication interventions are key to addressing these barriers.

Formative Research Few key questions for formative research in implementing PMTCT programs are: Questions for PMTCT Services, in General l

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What are the present and projected numbers/percentages of cases of pediatric HIV/ AIDS, based on ongoing monitoring and research, to date? What is the overall prevalence rate at ANC surveillance sites? What is the strength of existing VCT and other prevention, diagnostic, and treatment services? What are the plans for their improvement/expansion, including the design of stand-alone services or integration with other ANC and MCH services? What are the government policies on PMTCT, breastfeeding, and related matters? What is the percentage of facility-based births versus home births? What is the state of those facilities?

Questions Directly R elated to Communication Related l

What are the attitudes and counseling skills of health service providers involved, especially with regard to stigma toward HIV-positive people?

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What knowledge, attitudes/beliefs, and practices do health providers and key audiences have on HIV/AIDS in general and MTCT in particular? What is the level of HIV/ AIDS-related stigma? Are there family pressures to have children regardless of status? What are the attitudes of the key audiences towards service providers? What is the level of spousal/partner communication on VCT and additional childbearing? What knowledge levels, attitudes, and practices exist in relation to breastfeeding and exclusive breastfeeding, alternatives to breast milk, environmental sanitation, and hygiene? Who makes the decision in families on the choice to follow? Which are the best channels for communication to reach specific audiences on all of the above factors?

Audiences The audiences involved in the communication component of PMTCT programs are as follows: l l l l l

Women of childbearing age—especially when pregnant or anticipating pregnancy Husbands or regular partners, extended family Community “gatekeepers,” leaders, and committees Service providers in antenatal clinics (ANC) and MCH services Policymakers, national and district-level officials

Strategic Approaches Communication plays a similar role in PMTCT as it does in VCT. It can create awareness and demand among the general public for this service; it can strengthen service provision through improved IPC/C for providers; and it can create greater social acceptance and reduce stigma related to PMTCT. Because PMTCT is generally considered a medical intervention, communication has not been a prominent part of PMTCT interventions. In this section we describe how communication can work to support PMTCT services. Advocacy for P olicy Change: PMTCT should figure prominently in the national HIV/ Policy AIDS strategy of every country. It is important to establish a role for communication in PMTCT early on and to develop a comprehensive communication plan (e.g., through a national steering committee involving the national HIV/AIDS coordination body, ministry of health, major hospitals, UN agencies, NGOs and women’s organizations, as well as interested donor agencies). A significant part of the communication plan will include the development and implementation of strategies for political support and policy change. HIV/AIDS interventions are often emotionally charged, and programmers must be prepared for perspectives from groups who disagree with spending resources on PMTCT, instead of addressing the long-term survival

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of HIV-positive mothers, for instance. Another important issue is the development of clear guidelines for breastfeeding/infant feeding of HIV-positive mothers (see Box 5-8). Without clear communication of the facts to political decision-makers and policymakers, including the efficacy and ethics of interventions, support for the program may never materialize or it may quickly evaporate. Drafting and implementing a comprehensive PMTCT policy is important to establish support for this service. However, even before the policy is complete, early action is possible and can demonstrate the benefits of the program in terms of lives saved and illness and disability averted. Such advocacy activities may entail: l l l l l l

Well-designed, short presentations and pamphlets on the situation analysis and program objectives and strategies. Meetings with key stakeholders mentioned above to discuss and explain the program. IPC with key decision-makers supported by well-designed, brief materials. Training of print and electronic journalists so that they can provide informed reporting. Workshops and conferences involving key decision-makers, covered by the media. Production and broadcast or distribution of short videos that explain the program succinctly (useful to journalists who may want to use the idea for radio or TV broadcast).

Strengthening Service P rovision through Improved Provision Interpersonal Communication/Counseling Skills for P roviders Providers Implementers should not assume that the attitudes and counseling skills of service providers are adequate to establish PMTCT programs successfully (de Wagt, 2002). PMTCT adds a new dimension to VCT since it involves deeply emotional issues of parenthood, survival of offspring, decisions about continuation of the pregnancy, and infant feeding choices, as well as new dimensions of stigma and possible violent behavior between couples. Also, an additional dimension is present in PMTCT because service providers will be required to administer and ensure compliance with ARV treatment regimens. Some VCT services have been established to cater to young people or those about to marry soon, and counselors within these services may know little about PMTCT. Additionally, very often training of counselors involved in VCT is technically oriented and deficient in psychosocial aspects. Steps that may be taken to strengthen service provision include the following: l l l

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Establish selection criteria for PMTCT counselors; for instance, they need not automatically be those who carry out the clinical tests. Develop a curriculum, training manual, and implementation of training for counselors without “reinventing the wheel”; many resources are already available for adaptation. Train counselors to ensure that counseling materials are delivered in an interactive, not prescriptive, manner, so that mothers or parents can ask questions, understand the issues, and make informed choices. Create a lay counselor network that can assist overburdened health workers in providing basic counseling services. Programs can enroll HIV-positive mothers who have

210 Strategic Communication in the HIV/AIDS Epidemic Box 5-8: The Importance of Infant F eeding Guidelines for PMTCT Feeding The fact that 10 to 20 percent of infants who acquire HIV do so through breastfeeding has been a major setback to breastfeeding advocates. Publicity concerning this fact has often greatly increased the risk in mothers’ minds (de Wagt, 2002). However, chances of transmission increase over the long term, especially if the mother has been recently infected, does not practice exclusive breastfeeding, or has cracked or bleeding nipples. In industrialized countries, HIV-positive mothers are more likely to be able to afford adequate breast milk substitutes that can be prepared and stored in relatively hygienic environments. In developing countries, however, mothers who do not breastfeed may place their infants at greater danger from debilitation and death due to diarrhea and malnutrition rather than from AIDS. By not breastfeeding, the child is deprived of the natural immunity to diseases he or she would otherwise receive from breast milk. In addition, mothers in resource-poor environments usually cannot consistently administer replacement foods hygienically, may dilute formula foods because of poor education on the matter, or simply lack of money, thereby increasing the risk of malnutrition. Six months of baby formula in Kenya costs at least US $300, much beyond the reach of most families, and even in strictly controlled clinical trials, families often pressurize new mothers to breastfeed (Nduati et al., 2000). In addition to the high cost of breast milk substitutes, mothers also need to be able to afford fuel to boil water for mixing and cleaning utensils, as well as the time to do these tasks. They must have the full cooperation and support of their immediate family so that mixed feeding does not occur. It has been demonstrated recently that continued breastfeeding exceeding 18 months can eliminate any benefits ART can give a mother to prevent MTCT (Lange et al., 2002). Evidence indicates that exclusive breastfeeding for three to six months, followed by rapid weaning, may inhibit transmission of HIV via breastfeeding (Coutsoudis et al., 1999). However, only about a third of mothers in sub-Saharan Africa carry out exclusive breastfeeding (UNICEF-UNAIDS-WHO, 2000). The practice of mixed feeding may, in fact, increase the chances of HIV transmission through breast milk. Expressing breast milk and heating it may be another, safer method of replacement feeding. However, mothers in resource-poor settings usually have poor knowledge and skills in this method (de Wagt, 2002), and it requires extra time and resources and may not be carried out consistently and hygienically. Sources: See citations mentioned in box.

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recently delivered as mentors to educate, counsel, and support HIV-positive pregnant women (Besser, 2002). Provide psychosocial supervision and support for the counselors themselves in order to address the emotional issues and “burnout” brought about by continuous HIV counseling.

Creating A wareness and Demand Among Awareness (HIV -positive) P regnant W omen and Their P artners Women Partners (HIV-positive) Pregnant A communication strategy needs to reach the primary audience for PMTCT. All expecting mothers, those who know about their HIV status and those who do not, need to be informed about PMTCT issues such as the importance of VCT, the availability of a drug which can

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prevent MTCT, infant-feeding guidelines, as well as services available to women and their partners. Important steps may include: l

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Development of clear and accurate communication materials that will allow the HIVpositive mother to make an informed choice on whether to take drug treatment or whether to breastfeed, based on knowledge of existing practices in her community and the resources available to her. Use of materials, including print, mass media, videos at clinical waiting room areas, as well as community activities. Development of peer education networks and support groups among HIV-positive mothers who have already delivered.

In many countries, men are seldom involved in their female partners’ maternal health matters and those who are may be ridiculed by their male friends. Pregnant women who go to maternal health clinics alone may be encouraged to take HIV tests. They may have concerns with their husbands’ extramarital behavior that motivates them to learn their status. If they prove to be HIV-positive, however, they often find themselves in a difficult situation. Often when the wife tells her husband the result, he may refuse to get tested, blame her, turn violent, and accuse her of infidelity (Gaillard et al., 2000; Maman et al., 2002). On the other hand, men can be very supportive, and it may be other women in their communities who reject/stigmatize them. In some cultures, disclosure can lead to total banishment from the husband’s family, impoverishment, violence, or even murder. Sometimes women escape to earn a living through selling sex. To address this situation, some have proposed renaming MTCT “parent-to-child” transmission to indicate the male partner’s role in spreading HIV to the child. Counseling for VCT in PMTCT programs should involve both partners. When the couple makes the decision to be tested together, the counselor may be able to reduce or eliminate “victim-blame” attitudes and encourage the couple to make decisions and support each other in follow-up actions, including ART and options in infant feeding (Shutes et al., 2002). The following steps may be feasible to involve male partners in PMTCT: l

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Involve key male leaders in the community in the analysis of the situation and development of a roll out strategy for VCT and PMTCT services. Have them reflect on the causes of HIV transmission and its effect on women and children. Train male counselors to reach out to men on the need for VCT testing and follow up or have male community outreach workers offer women assistance in engaging their partners (Shutes et al., 2002). Integrate information on PMTCT and couple counseling in post-test clubs. Use mass media to promote male involvement as a desired social norm for VCT and PMTCT. Integrate PMTCT into family planning promotion, where there has been more experience with male involvement. Learning of one’s HIV-positive status provides an opportunity for couples to reassess their family size and future goals.

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Communication about Breastfeeding As noted earlier, between 10 to 20 percent of infants who are born to HIV-infected mothers acquire HIV through sustained breastfeeding (i.e., up to 18 months). Since many countries have undertaken long-term efforts to promote exclusive breastfeeding, the possible transmission of HIV through this means is especially troubling and conflicting. It is important to establish a national communication policy and standardized messages so that women and their partners are not confused on the issues and are able to make informed choices, based on solid facts. Preble and Piwoz (2002) summarize these facts here: l l

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Fifty to 70 percent of transmission occurs in the first six months. Exclusive breastfeeding may decrease this risk. Early introduction of other foods and/or pathogens causes gastrointestinal disturbances that increase the ability of HIV to penetrate the wall of the gut. The risk of HIV transmission persists for as long as the infant is breastfed. Mastitis, breast abscesses, cracked and bleeding nipples, and other forms of inflammation increase risk. High maternal viral load and poor immune status increase risk. New maternal infection during breastfeeding increases risk to about 30 percent. Infants with oral lesions, particularly during the first six months, are at greater risk.

As is evident, communicating these facts to often illiterate mothers who cannot “see the enemy” may be difficult. Therefore, dialogue and pictorial aids will often be needed. Partner involvement and sometimes family involvement is crucial (e.g., grandmothers and aunts may greatly influence mothers to breastfeed). It may be possible to draw a risk analogy that is based on cultural knowledge and traditions. This must be carefully researched, however. Communication through mass media may be possible but messages must be simple and comprehensible and carefully designed so as not to stigmatize women who do not breastfeed. Coordination between counseling and group education messages and mass media is essential. As noted earlier, exclusive breastfeeding up to four to six months (depending on national policy) may be the best option for the survival of infants in resource-poor settings. If communicators take the simplified approach that frightens people away from breastfeeding, more children may die from other diseases than would have died of HIV/AIDS. Creating Greater Social Acceptance/ R educing Stigma R elated to PMTCT in the Community Related As noted above, many women decide to learn their HIV status because they are pregnant and want to take steps to protect their unborn child. It is useful to recognize that even in high prevalence countries, the majority of pregnant women are HIV-negative. The motivation that has brought the woman, and hopefully her partner, to the program can be used to keep the couple negative. Testing negative is one of the great benefits of PMTCT programs. The program provides an opportunity for people to act and to overcome their fear and suspicion. Therefore, PMTCT should be integrated into overall prevention programs.

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PMTCT also offers an opportunity for reducing overall stigma against PLHA, especially when programs expand beyond the pilot stage. Communities everywhere value children and want to ensure their protection and survival. The effect of adult behavior on their children offers an opportunity for reflection by community members, which can turn into action through facilitated meetings and other processes. The object of such activities is to also foster a supportive environment for women and couples who face difficult decisions. Strategies that should be undertaken follow: l

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Involve community leaders and members from the beginning to gain support for the program, as well as to provide caring environments for HIV-affected families. Such involvement accelerates mobilization of the community to address the issue of stigma. Include stigma issues related to PMTCT in existing mass media programs. Integrate PMTCT in mass media and life skills programs. PMTCT should also become part of mass media programs and life skills training aimed at young people so that they learn how to protect their future families from infection, as well as how risk behavior may affect their future plans. Train counselors on using HIV-negative tests as the best opportunity for reinforcing positive behaviors including fidelity, periodic abstinence, and condom use in times of uncertainty. (Although little success has been achieved in use of condoms by regular partners in HIV/AIDS prevention programs, PMTCT does offer a strong counseling opportunity to promote this practice.) Use PMTCT interventions as an opportunity to reinforce the need for STD testing and treatment. Integrate PMTCT into other programs. Promotion of PMTCT may be feasible as part of regular ANC services or as an overall HIV prevention program through local media, such as community radio or community-based media, or through group processes. Program planners must use the national mass media carefully in order to avoid stigmatizing those accessing services.

Key Issues to Communicate Message themes for PMTCT should be included to: l l l

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Motivate pregnant women to get tested for HIV (e.g., “Getting tested can save you from passing your virus to your child. Are you taking chances?”). Motivate HIV-positive women to go for counseling about their family planning options. Inform HIV-positive expecting mothers that drugs are available to protect their children from HIV transmission during pregnancy and delivery and motivate them to use the appropriate services. Inform mothers about the latest breastfeeding guidelines (outlined in the previous breastfeeding section). Whatever choice is made, mothers must be made aware of the dangers of bottle feeding and the need to adopt alternatives, such as spoon-feeding, safely. This applies to the use of formula, expressed breast milk, or animal milk.

214 Strategic Communication in the HIV/AIDS Epidemic Box 5-9: Nigeria: Excellence in PMTCT Communication Planning While most countries identify communication as a key component of the PMTCT program, it is usually identified as a need when service uptake numbers are not being achieved. To this end, Nigeria stands out as a leader in overall planning for PMTCT communication. From the beginning, the Nigeria country team has been incorporating communication into the overall program design phase. This logical planning has allowed the country team to engage in qualitative and quantitative community-based research before the development of the communication strategy. It has also allowed the country team to make last minute adjustments to the PMTCT program based on research results, before services are in place, allowing for a more tailored approach to service delivery. Another useful practice has been identifying the need for national and state-level PMTCT communication working groups to ensure that a team approach is utilized to keep communication activities moving forward in a timely manner. This unique approach has enabled Nigeria to form communication teams at the state level that include key local participants such as MOH, CBO/ NGOs, PLHA, religious and local opinion leaders, and the private sector. This multi-sector, team approach is often talked about but rarely implemented. Nigeria’s commitment to moving forward its newly developed communication strategy is clearly evident in its attempt to decentralize PMTCT communication at state levels, so that locally appropriate interventions can be initiated from state level outward, reaching all levels of society. One of the key global lessons learned is the importance of integrating PMTCT into routine ANC service delivery. Nigeria is also attempting to truly integrate PMTCT into their ANC programing. Rather than focus on PMTCT as a vertical program, the Nigeria team is focusing on and promoting the “new and improved” ANC services that are now available to all pregnant women. Taking a cue from India, Nigeria is also considering the use of one main message, focusing on protecting exclusive breastfeeding, while taking the focus of replacement feeding away from HIV/ AIDS and attempting to begin de-stigmatizing those women who choose replacement feeding as a result of their HIV status. Source: UNICEF, 2002b l l l l l

Inform HIV-positive mothers about positive living, and encourage them to visit existing support groups. Develop messages for male partners to get involved. Address domestic violence issues. Integrate PMTCT as a critical issue during VCT and general repro-ductive health promotion. Address potential stigma associated with PMTCT (e.g., women suspected of being HIV-positive when they do not breastfeed since it is the norm in the community).

Challenges and Lessons Learned Need for a Systematic Plan: To date, many PMTCT interventions have been very fragmented, often with no clear, overall plan, including the communication component. One reason is the tendency to treat PMTCT as a very medical/technical intervention or an “add on” to

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other programs. Although integration is needed, a comprehensive plan based on strong behavior and social analysis is required. Personnel Constraints: Programs face constraints identifying and training personnel to carry out VCT and other PMTCT activities and sustaining their services. Very often existing health service providers are overloaded and suffer from burnout, even though almost everyone agrees that integration with existing health services is the best option. They may need additional incentives to take on these extra tasks. In addition, medical personnel are often living with the stress of HIV and AIDS in their own lives and families. Communication on Breastfeeding: Pro-breastfeeding advocacy groups have pointed out that the HIV/AIDS pandemic has allowed an opening for international baby formula producers to re-establish their lost ground, following the establishment of the international code on marketing breast milk substitutes in the 1980s. Producers of formula have aroused suspicions with free donations to PMTCT pilot programs. There is a challenge involved in establishing a positive and regulated role for infant formula producers and drug companies who may benefit in the short term by rapid expansion of programs, even if countries are not ready. Another problem is the stigma associated with not breastfeeding. In many resource-poor countries, breastfeeding is the norm and women who deviate from this have to deal with stigma and discrimination due to the suspicion that they are HIV-positive. In Uganda, this issue took an interesting twist when the pilot program imported baby food formula in specially marked containers with local language instructions for women who chose not to breastfeed. It was found that women switched the formula to the containers of formula that are readily available in the market to avoid being singled out and stigmatized as HIV-positive (Mugabe, 2000). One of the biggest challenges of communication around HIV and infant feeding is, on the one hand, helping HIV-positive mothers to make a choice, while, on the other hand, protecting, promoting, and supporting breastfeeding among HIV-negative mothers and mothers with unknown status. This paradox has resulted in increased attention to breastfeeding support activities but also to conflicting communication messages for different groups. Communication and AR T: Communicators also need to deal with evolving issues in utilizaART tion of ARV drugs (e.g., rumors and myths regarding the intentions of authorities in dispensing the drugs and the frequent announcement of new research findings, much of it conflicting). Communicators must also contend with the growing cry for women and all PLHA to receive ART as a human right, allowing parents to survive and contribute to a positive future for their children. Use of Mass Media Media: As PMTCT programs expand in developing countries and VCT services and ART become widely available through health services, communication channels have a strong role to play in the creation of demand for these new and expanded services. This entails an expanded use of community or group media channels that reach into the community and engage people in a process of discussion on PMTCT. Community newspapers and theater are some other options. Programs should also consider education on PMTCT through organized women’s groups and through venues frequented by men. Such wide-scale involvement may further reduce the stigma associated with PMTCT. Television and radio are possible

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options but care must be taken not to isolate PMTCT services. Rather they need to be seen as a part of improved antenatal care; such promotion should not begin until all relevant services are in place in program implementation areas. Otherwise, potential adopters will become negative about the program and avoid PMTCT services. In other words, not everything can be done at once. Programmers should prioritize the issues they want to communicate, starting with those that link to existing services and enabling environmental factors.

Case Study: Expansion of PMTCT in Thailand Background and Strategy: Globally, Thailand has the longest running PMTCT program. In 1995, the Thai Red Cross began ZDV therapy for HIV-positive pregnant women and since then, more than 4,000 women have received the Thai Red Cross PMTCT services. The Ministry of Population and Health (MoPH), after substantial studies, began a government-run PMTCT program in select provinces. The Thai Red Cross and the MoPH are managing the two main PMTCT programs in the country. In addition to the government, many other players participate in the PMTCT program, including UN agencies, international NGOs, and local NGOs. For more than 10 years, Thailand has offered VCT at anonymous testing centers, so the concept of VCT is not new to Thai society. Cultural practices and respect towards health workers appear to account for the high acceptance rate of VCT among pregnant women, although not all return for their results. Some have questioned whether or not the VCT offered in Thailand is actually voluntary, since women are often asked in a group if they want to decline being tested. While Thailand enjoys a high acceptance rate of pregnant women accepting VCT, 10 to 35 percent of the pregnant population in PMTCT catchment areas are not accessing or accepting services. To date, the communication component of the program is ad hoc. Materials have been developed based on issues that arise during monthly meetings. However, there is no community involvement in materials development, and no overall strategy exists for PMTCT communication. The MoPH has requested assistance for the development of social mobilization and communication activities that support 100 percent uptake of the PMTCT program in participating sites. R esults: One of the most impressive successes in the global PMTCT movement can be found in northern Thailand’s Chiang Mai province at Sanpatong District Hospital. The hospital director and staff strongly support counseling. Unlike most counseling scenarios where all health workers are trained in counseling, Sanpatong health workers are asked if they would like to become counselors and those who volunteer receive extensive training. They become highly motivated and dedicated to counseling clients for HIV. Counselors meet weekly as a counseling team (counselors, supervisors, program managers, and often the hospital director) to discuss and report on counseling issues, report the number of clients counseled, and share difficult or challenging case studies. The commitment from the hospital

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director appears to make an enormous difference in the quality of counseling and communication activities available at this PMTCT site. In addition, this model site also provides a community-based program called “Community Preparedness,” which focuses on training youth advocates in each home within a community. At least one youth per household participates in a one-week camp to learn about a variety of issues related to HIV, ANC, and PMTCT. Youth advocates are expected to share information with family members and friends, and to mobilize their community to support improved health seeking behaviors related to PMTCT, ANC, and primary HIV prevention. Sanpatong Hospital estimates that communities with this program in place report nearly 100 percent VCT rates for pregnant women, although these figures have not been confirmed. Challenges and Lessons Learned: Despite the length of time that PMTCT has been available in Thailand, HIV-related stigma still plays a vital role in Thai society. Typically, in high prevalence areas, stigma is lower, while in lower prevalence areas, stigma appears to be higher. The reason for this imbalance seems to lie in the amount of community-based HIV activities in a particular area. In the higher prevalence areas, communities have had more exposure to HIV-related information and are better informed about facts and understand issues surrounding HIV. These communities have also had a higher percentage of PLHA within their communities that require care and support, and this fact is important in overall community acceptance of PMTCT services. Other challenges to achieving 100 percent acceptance of PMTCT services include: (i) lack of transportation to and from participating clinics and hospitals from rural areas; (ii) language barriers with hill tribe clients (often nobody in the center can speak the clients’ dialect); and (iii) community-based stigma and discrimination towards PLHA. Currently, the UNICEF/ MoPH communication goals for PMTCT include increased acceptance of VCT at testing sites in PMTCT districts and provinces, increased enrollment at reproductive health center levels, and increased overall community knowledge of the PMTCT program and its benefits. Source: UNICEF, 2002b

The Role of Communication in Anti-Retroviral Therapy Rationale The speed with which HIV advances to AIDS-related symptoms in individuals varies greatly from case to case. Proper nutrition, a positive mental state, prevention of reinfection, and effective treatment of opportunistic infections are essential elements in slowing the pace. However, ART, which directly suppresses the replication of the virus, is now a feasible option for a growing number of people in developing countries. Such therapy has been available to

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PLHA in industrialized countries since the mid-1990s, and is now recognized as effective in reducing viral load, meaning the amount of HIV in the blood (NAM, 2002). ART was given a great boost in the mid-1990s when the so-called “triple cocktail” of drugs became available. HIV works by invading the helper T lymphocyte cells in our blood, a basic element of our immune system. HIV uses an enzyme, “reverse transciptase,” to change the genetic code of the invaded cell and another enzyme, “protease,” to replicate itself. This process releases billions of new copies of HIV into the blood. ARV drugs work by blocking these two enzymes. Hence there are two main categories of ARV drugs: Reverse Trascriptase Inhibitors (RTIs) and Protease Inhibitors (PIs). RTIs are divided, according to their chemical composition, into Nucleoside Reverse Transcriptase Inhibitors (NRTIs) and Non-Nucleoside Reverse Transcriptase Inhibitors (NNRTIs). The various combinations of these drugs are called “HAART” or Highly Active Anti-Retroviral Therapy. With the availability of HAART, HIV/AIDS no longer constitutes a death sentence for PLHA who can afford such medication. In the West, public personalities such as the AfricanAmerican basketball player “Magic” Johnson continue to live healthy, active, and productive lives for over a decade after declaring their HIV-positive status. However, even though HAART has made an enormous impact on the treatment of HIV and AIDS, it cannot be considered a cure. Moreover, it has side effects, toxicity, and may promote drug-resistant virus strains. Also, at commercial costs of US $10,000 to $15,000 a year in industrialized countries, until recently HAART has remained a treatment for the rich or for those who have adequate health insurance. However, changes have taken place as is noted below: L owering the P rices of HAAR T Prices HAART A combination of factors has brought about rapid changes in AIDS care. Around 1996, Brazil, Thailand, and later India began to manufacture generic ARV drugs and various triple therapies. Brazil made them available free of cost to all of its HIV-positive citizens. Thailand sells them to other countries but does not yet freely distribute them in its own public health system. India’s company, Cipla, announced in early 2001 that it would make available worldwide at least one combination (not containing expensive protease inhibitors) for a price of US $350 per year to agencies that would distribute the drugs at no cost to PLHA. International pharmaceutical companies protested for a number of years that these companies were outright pirating their drugs, which, they claimed, had cost a great deal to research and develop. However, they finally succumbed to the pressures of intense lobbying by advocacy groups and NGOs, as well as the actions of generic manufacturers. Some companies made considerable cuts in prices for the use of several drugs in resource-poor countries (UNAIDS, 2002a). The struggle for fair drug prices continues even after the World Trade Organization recognized in November 2001 that the HIV/AIDS pandemic, as well as TB, malaria, and other epidemics, represent a “national emergency” for which governments have the right to issue compulsory licenses authorizing the use of patented products (UNAIDS, 2002a).

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However, the majority of the countries in need do not have the capacity to produce generics and access to drugs remains a major problem here. Access to T reatment a Human Right? Treatment Even in the range of US $300 to $800 per year, HAART remains out of reach of the majority of PLHA in developing countries today. In sub-Saharan Africa, with an estimated 28.5 million people living with HIV or AIDS, fewer than 30,000 people presently have access to ART (UNAIDS, 2002a). There is growing consensus in the international community that access to HAART is a human right, and it remains morally and politically unacceptable to deny treatment to those living with HIV and AIDS simply because they were born in poor countries. Thus, at the International AIDS Conference in Barcelona in July 2002, a number of key speakers underlined the goal of providing HAART for at least three million HIVinfected persons by the year 2005. Funds for ART are now available through mechanisms such as the Global Fund for HIV/AIDS, Tuberculosis and Malaria. Brazil has emerged as a model for effectively bringing ART to scale while continuing to emphasize prevention. ART is now available to over a hundred thousand Brazilians living with HIV and AIDS. The number of annual AIDS deaths in 2000 was one-third the number in 1996, and the number of new HIV infections is much lower than what was forecast a decade ago (UNAIDS, 2002a). Moreover, the experience of Brazil suggests that the overall costs of HIV/AIDS to national economies may be less for providing ARV drugs than covering the hospital costs of patients with full-blown AIDS (UNAIDS, 2002a). However, in order to determine if ART is really accessible, projects clearly need to look beyond the cost of treatment and assess the adequacy of existing health care structures to deliver the drugs (ICASO, 2002). Adherence and Drug R esistance Resistance Procuring and giving PLHA access to these drugs is only the first step. The effective use of ARV drugs requires 95 percent adherence to the regimens (i.e., correctly taking the medication in the right amounts and according to schedule 95 percent of the time). Failure to do so can cause drug resistance that, in turn, causes mutations of the virus, leading to the creation of new HIV subtypes that spread through the population. Many have questioned the ability of the present health infrastructure in developing countries to ensure the constant supply of drugs and supervise their administration to large numbers of clients. Even in the wellresourced Drug Access Initiative in Uganda established by UNAIDS and WHO, approximately 20 percent of patients dropped out of treatment in 2001 for diverse reasons, including economic factors, the difficulty of adherence to complex drug schedules, the perception that immediate health improvements meant they were cured, and competition from traditional therapies (UNAIDS, 2002a). This section examines the role that communication plays as a rapidly growing number of countries begin incorporating HAART into their treatment and care programs on a large scale. Like other interventions, this one must be informed by in-depth, formative research.

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Formative Research The key questions for formative research depend on the plans for expansion of HAART in a particular country. It is senseless to develop a communication plan if the drugs are not going to be available in the near future. However, programs that are starting up or have concrete plans in place should address the following questions relevant to communication: l l l l l l l l l l

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What is the estimated number of PLHA, including the estimated numbers in various stages of the disease? What traditional and other medicines are PLHA presently taking and what are their attitudes towards those medicines? How do people conceptualize and talk about HIV? What is the diet and nutritional status of potential clients? What level of knowledge do PLHA and service providers have about ART and what are their attitudes towards the medication? What kind of drug regimens are being recommended and how complex are they? What is the most acceptable name for ARV drugs in the local language? What are the key facts that patients must know to successfully adhere to regimens? What are the common side effects of using ARV drugs and how can programs communicate these properly to clients so that they are prepared? What are the present experiences in adherence to drug schedules, both for ARV drugs and other drugs? What have been the key factors impeding or facilitating drug compliance? What is the usual prognosis and progression of the disease with these drugs, and how can programs communicate to patients that they are not cured? Where will be the primary service delivery points for HAART? Who will interact with patients and what level of counseling and interpersonal communication skills do these people presently have? What prices will PLHA have to pay for the drugs, both in monetary terms and opportunity-costs?

Audiences The audiences for communication on treatment and care with ART are segmented as follows: l l l l l l

People living with HIV and AIDS, their families, and community peers Policymakers and health decision-makers Medical doctors, other health service providers, and chemists/pharmacists Community leaders and support groups for PLHA Traditional medical personnel Nutritionists

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Strategic Approaches Communicating about ART or HAART to PLHA promises to be more challenging and complex than communicating to mothers about PMTCT. Whereas PMTCT involves administration of ARV drugs to the mother once or twice before and/or after giving birth and to the infant after birth, ART involves compliance with (and sometimes changes in) a daily drug regime over the duration of the patient’s life. Given that HAART is not yet widely available and that HIV is a complex disease that progresses to AIDS in individuals at different rates and with different manifestations, it is very difficult to develop a broad, multimedia communication plan to support a program focusing on compliance issues. It is more likely that for the foreseeable future, the strategic approach will focus on client counseling and communitybased strategies. Mass media may play a supporting role in such programs, however, as described in the next section. Counseling and Interpersonal Communication: In addition to the pre- and post-test counseling, discussed in the previous section on VCT, programs that distribute ARV drugs must invest in strengthening counseling and IPC skills of medical personnel, other health service and pharmaceutical providers, as well as nutritionists involved in supporting PLHA. These providers must be able to deliver clear and concise instructions on how to take the drugs, and they must be able to motivate people to stay on course despite side effects such as nausea and diarrhea or positive signs of health recovery. In addition, PLHA will begin treatment at different stages of the disease. A viral load test—CD-4 count—along with the probable length of time of infection, will determine the most probable stage of the disease in a patient. One key objective is to motivate people to get a clinical assessment of their health status as early as possible after they receive their positive results and before the immune system receives sustained damage. However, the expected benefits of early ART must be weighed against the risk of side effects and the possibility that if the treatment stops working effectively against HIV, a drug-resistant subtype of HIV may result. The decision of when to begin ART for already established infections depends on the level of the viral load, the speed at which the CD-4 count is falling, the likelihood of achieving good adherence, the presence of symptoms, and the patient’s own wishes (NAM, 2002). ART does not entail a standard prescription for the duration of a person’s life. For instance, doctors often recommend that people starting treatment for the first time take two NAs and one NNRTI drug, so they will encounter fewer problems with side effects, although NNRTIs are known to induce resistance more frequently. Each combination of drugs has both advantages and disadvantages. (NAM, 2002) Communication plays an important role in motivating PLHA to seek treatment and, for those who begin taking ARV drugs, to adhere to treatment. These issues presently constitute a communication challenge for ART as distribution of ARV drugs is expanding in developing countries. As new ARV drugs become available, prescriptions and counseling issues may change, or hopefully, be simplified. In addition, patients need to understand instructions for taking certain drugs with food and others without food. Also, counseling on nutrition and on physical exercise as well as

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psychosocial support are needed for PLHA to strengthen or maintain their physical and mental health as long as possible (AED, 2001). The role of indigenous, herbal-based medicines in supporting the compromised immune system of PLHA should also not be discounted. In fact, although they are the exception, some people from developing countries who score high on healthy lifestyles and mental health have been known to live for many years without ART (Singhal and Rogers, 2003). Print Media: Concise job aides and patient guides are already available in various countries where ART has been used for some time, and they can be adapted and translated according to the regimens being used. It is important to develop simplified, color-coded instructions for each type of drug, where combinations are used. Clinic-based posters and flip charts can be used for communicating messages to patients. Such messages may include the need to adhere to schedules, side effects to expect, and what to do when they occur, as well as when to have viral load and CD-4 counts measured. Community Mobilization: The last section of this chapter covers many of the communitybased actions that are needed to support PLHA, including capacity-building, self-help activities, and educating opinion leaders. The addition of ART to this mix brings both positive and negative dimensions. The upside is that PLHA may regain their health and may provide positive motivation for a community that has been hit hard by AIDS. The downside is that some community members may see the change as a “miraculous cure” instead of a treatment for symptoms of an incurable illness. This situation may lead to rumors and confusion that may be counterproductive to the overall efforts to prevent and control HIV/AIDS. Therefore, where programs roll out ART in communities, they must carry out educational processes that include community opinion leaders and gatekeepers, as well as support groups to prepare communities for HIV/AIDS treatment (Harrington, 2002). In Brazil, the process of community involvement benefited from the full-scale support of the government in an overall prevention and treatment approach, as mentioned previously. However, Brazil is a middle-income country with adequate financial backing for a wide-scale ART intervention. There is little experience with ART programs in resource-poor countries. One exception is Haiti, where ART has been implemented widely in a community-based pilot program, restoring large numbers of people to relatively healthy states and addressing questions of stigma (Bastos, 2002). News Media: Members of both the print and electronic news media should be fully briefed on the implementation of ART programs in a particular country. Inaccurate reporting on ART programs can badly damage the program and negatively affect PLHA, policymakers, opinion leaders, and the general public. For instance, careful differentiation of the medical terms “treatment” and “cure” is important. The news media may not need to understand all the nuances of medical literature, but they should be fully aware about ART and what it can do for PLHA. For instance, programs can schedule briefings for the press at the launch of a new program or drug access initiative. However, it must be made clear to the press that the program can only give access to a limited number of people in whatever geographic area it is targeting, until ART is widely available and a system is in place to support it.

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Electronic Media: As ART becomes widely available in a particular country, the electronic media can serve to establish social norms regarding treatment and to de-stigmatize PLHA who are on treatment. Mass media can also portray positive lifestyles and the need for nutritional programs for people on ART. Developing role models is one way to portray and popularize ART. Weaving ART into TV and radio drama and talk shows is another way to communicate such therapy in a popular way, making it a social norm to take such medication. However, scriptwriters should avoid myths and inaccurate statements because mass media can have a powerful effect on public opinion and careless errors could set back the progress of the programs significantly. Workplace P rograms: In many developing countries, workplace programs are the first channel Programs: for ART. A number of companies or organizations have decided to provide ART to their HIV-positive employees to maintain their health as long as possible; to cut down on absenteeism, sick days, and funerals; and to decrease the need to recruit and train new staff. Such programs are relatively easy to set up and maintain, as long as the organization is willing to commit the necessary resources in the long term. People living with HIV and AIDS in such organizations are a “captive audience” who are usually motivated to stay as healthy as possible so that they can continue to earn a living. Thus they are motivated to show up for testing and counseling and to adhere to drug schedules. Counseling skills for providers are just as important in such settings as in public or private clinics and hospitals, and similar job aides can be employed. A good example of such a program is Daimler Chrysler’s program in South Africa that reaches all of 4,445 employees and their primary family members, roughly 23,000 people, with drugs and doctor’s visits for an estimated cost of US $1.86 million annually (Greimel, 2001).

Key Issues to Communicate Communication in relation to ART is a relatively new field. A number of key issues to communicate may be: l l l l l l

Communicate the fact that ARV drugs are not a cure for HIV and AIDS. Promote safer sex while taking ART; remind PLHA that they can still infect others or be re-infected. Communicate drug adherence clearly. The regimen prescribed by doctors/care providers must be followed. (Color-coding helps!) Underline that non-adherence builds drug resistant strains of HIV, not only for the the patient but for others as well. Remind audiences to seek help from their doctor if they feel ill on taking certain drugs or drug combinations. Remind audiences that they should not hesitate to ask their doctors/health care providers about their treatment if they feel they do not understand the treatment effects enough.

224 Strategic Communication in the HIV/AIDS Epidemic l l l l l l

Communicate the importance of staying in touch with treatment service providers to monitor ART effectiveness, viral load and side effects. Recommend the importance of nutritional requirements, treatment of OIs and exercising to support the immune system. Promote the maintenance of a positive/optimistic state of mind. Promote joining support groups. Remind audiences that people can live long and relatively active and healthy lives with the right mixture of therapies. Communicate the fact that those who have access to ART are among the few lucky ones in the world and motivate them to advocate for the access of other PLHAs in their community.

Challenges and Lessons Learned ART or HAART programs are relatively new, thus we do not have a large body of experience upon which to draw. However, programs in the US, Europe, and Brazil provide some insights. Need to Communicate P rescriptions as Simply as P ossible: The complexity of properly Prescriptions Possible: following HAART regimens demands clear communication methods. Unfortunately, in Brazil, the colors of different drug bottles indicate different brands, rather than different types of drugs, leading to confusion by PLHA, especially those with poor reading skills. “The confusion is unnecessary and could (have) be(en) easily eliminated by the Brazilian government, but it has not been, despite pleas from health practitioners” (Singhal and Rogers, 2003). At any rate, some organizations in Brazil have developed simple, pictorial schedules for people to follow. Amount of Community Support and Counseling R equired: A successful Harvard program Required: in Haiti fostered a great deal of community participation and involvement. In his plenary presentation speech at the 14th International AIDS Conference in Barcelona on 11 July 2002, Dr Paul Farmer of Harvard stated that community volunteers were involved in maintaining adherence to ART regimens in Haiti through visits to households up to five times a day. If this is the kind of attention and input needed for 95 percent compliance, it is too early to say whether this experience can be replicated in resource-poor environments outside of highly supervised trials or pilot programs. The Threat of Behavior Disinhibition: ART reduces viral loads and makes PLHA feel healthy again. However, such drug treatments, while suppressing many of the visible symptoms of the disease, do not necessarily stop transmission of the virus if unsafe behavior continues. Does the wide-scale provision of ART change attitudes and behavior towards prevention? In the US, the Netherlands, and Britain, studies show recent increases in risk behaviors and an upswing in HIV infection among gay men, discordant couples, and drug users. The rise in risk behavior appears to stem from the fact that ART and social services are readily available, along with a number of perceived benefits to being HIV-positive, such as belonging to a strong network of people who are publicly recognized and who receive resources and attention

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(Chen et al., 2002; Dukers et al., 2002; Mercer et al., 2002). However, the counter argument is that prevention efforts have only provided real results in a handful of countries to date, and at least one successful example, Brazil, has demonstrated the feasibility of stepping up prevention efforts while providing ART to over 100,000 people living with HIV or AIDS (See Brazil case study). Balancing P revention and T reatment: An adequate, global response to the HIV/AIDS Prevention Treatment: pandemic is estimated at US $9.2 billion annually—$4.8 billion for prevention and $4.4 billion for treatment, care, and support (Schwartlander et al., 2001). Thailand achieved great success by the mid-1990s through its 100 percent condom program, but there was still evidence of high infection among street-based sex workers, and infection rates continued to rise in IDUs to over 40 percent nationally. However, the advent of ART and HAART programs had a dramatic impact on the government’s prevention budget, which declined by half between 1997 and 2000 (World Bank, 2001). The Thai government reversed its spending priorities in 2001, and ARV drugs became cheaper—a lesson for other countries. HAART programs are relatively expensive, regardless of the cost per capita, and they should not replace the emphasis on prevention. In sum, the interaction of prevention behavior and new treatment technologies is a complex social and economic issue. The final chapter of this book further explores these questions. HAART is now rapidly becoming a large part of the HIV/AIDS care, treatment, and support scene, with increasing resources being devoted to drug access for PLHA in developing countries. The interaction between prevention behavior and HAART needs to be carefully researched and documented, and lessons learned have to be integrated into communication so that prevention programs are strengthened rather than reduced, as more funds are directed to treatment. Programs must embrace both objectives in a coordinated, comprehensive manner. Lessons Learned l l

l

l

l

l

Providing effective therapy can reduce stigma and have preventive effects (de Vitoria, 2002). Relapse into unsafe behaviors as an unintended consequence of ART has emerged as a problem, because people no longer perceive AIDS as a mortal threat or just simply feel more optimistic because of the availability of treatment (Bastos, 2002). The strongest factors for compliance are good communication and a strong relationship with health providers, as well as emotional support and practical assistance through attending support groups. Key barriers include stigma and fear of rejection, low self-esteem, complexity of therapeutic regimens and their heavy side effects, together with alcohol and other drug use (Carneiro-da-Cunha et al., 2002). Peer support groups help PLHA take an active role in the treatment process and should be expanded to increase treatment adherence and improve the latter’s quality of life (Carneiro-da-Cunha et al., 2002). Community involvement in treatment preparedness is a major requirement for a program’s success (Harrington, 2002).

226 Strategic Communication in the HIV/AIDS Epidemic l

Major challenges persist in the improvement of HIV infection diagnosis: – Expanding CD-4 and viral load networks (VCT and PMTCT) – Monitoring adherence and viral resistance – Monitoring quality of HIV care (health services, ART management, etc.)

l l

The TB control infrastructure can be used and adapted to combine ARV drugs with directly observed therapy (DOTS). Management of HIV and AIDS among young people requires special attention. Providers need to be trained in youth-friendly counseling and to develop a realistic prevention and care plan (Kiragu, 2001).

Case Study: Going to Scale with Anti-Retroviral Therapy in Brazil Background: Brazil’s first HIV/AIDS case was reported in 1980. Prompted by community advocates, the government acknowledged by 1984 that HIV/AIDS had become a major public health problem, and initiated a swift national response. The nature of the epidemic shifted from homosexual to heterosexual transmission, progressively affecting the adolescent and female populations. By 1995, AIDS was already the most frequent cause of death among women between 20 and 49 years, and the second most frequent killer of men the same age (UNAIDS, 2002e; USAID 2002c). Brazil stands out as a world leader in HIV/AIDS care and prevention, including universal ART access for the general population. By the end of 2002, 105,000 people were receiving state-funded ART (USAID, 2002c). In 1996, the government established the right to free medication, including drugs for opportunistic infections, with ART recommended for all AIDS patients with a CD-4 count below 200. Since then, the country has observed a striking reduction in mortality, morbidity, and hospitalization rates of HIV-positive patients (Teixera, 2000). Brazil was able to achieve these results through the use of eight generic versions of ARV drugs produced in the country. The experience of Brazil—as well as South Africa, Thailand, and Haiti on a much smaller scale—has shown that ART can be administered in resource-poor settings with good outcomes. Apart from serious questions about the financial sustainability of the universal treatment access policy, the country’s major challenge now consists of developing ways to improve patient adherence to treatment, monitoring of viral resistance, and improving the quality of its health services (Galvao, 2002; Teixeira, 2002). Audience and Strategy: A major factor in Brazil’s treatment and care strategy was the existence of a well-equipped public health system. The Ministry of Health was able to combine

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universal access to treatment with a sophisticated network of referral centers and laboratories involved in the provision of care and in the monitoring of patients on treatment. An advisory committee developed treatment guidelines. The government further ensured logistic drug control systems through 424 dispensary units, 150 laboratories (to monitor CD-4 count, viral load, and HIV resistance testing), and a network of more than 900 public and alternative HIV/AIDS care facilities (Teixeira, 2002). These facilities include accredited hospitals, specialized care services, day hospitals, and therapeutic care projects, including VCT testing services (Bermudez and Oliveira, 2001). Whereas Brazil is best known for its provision of free drugs, it also has an impressive program for education, prevention, and monitoring efforts (Galvao, 2002). Mass media campaigns target the general public in promoting the use of condoms, dialogue between parents and their children, and compassion for PLHA (Singhal and Rogers, 2003). Specialized interventions and condom social marketing also target vulnerable population groups such as MSM, IDUs, and sex workers. Support to community and NGO prevention projects (Teixeira, 2002) and the continued involvement of NGOs, especially those consisting of PLHA (USAID, 2002c), have contributed to the program’s success. In 1998, the government enlisted the private sector into the AIDS arena by requiring all companies to implement HIV/AIDS workplace interventions. The 20 largest companies in the country have more or less followed this decree (Makinwa and O’Grady, 2001). More recently, the government implemented a nationwide strategic planning process to ensure better multisectoral collaboration and implementation (Kropsch et al., 2002). Key elements in Brazil’s success include the early national response and leadership, cooperation with civil society groups on all decision levels, and a balanced prevention and treatment approach, with a focus on human rights for PLHA (de Vitoria, 2002; Teixeira, 2002). Moreover, the development of Brazil’s political response to the AIDS crisis coincided with a national process of returning to democracy, following a 20-year period of military government (Bermudez and Oliveira 2001), a development that provided further impetus to the program. Recent studies in Brazil have found how important communication between health providers and clients is for adherence to complicated ARV drug regimens (Carneiro-da-Cunha et al., 2002). Nevertheless, little information exists in published form to explain how Brazil supports its health providers and services to facilitate this process. Brazil has a variety of examples of community involvement in so-called “treatment preparedness” (Harrington, 2002), which is viewed as an essential requirement for a program’s success by many international treatment advocates. For example, the MOH and UNESCO project called “We don’t want only drugs!” is run by PLHA who train HIV-positive workers to help other PLHA follow their treatment regimes. R esults: Between 1996 and 2002, Brazil claims to have reduced AIDS-related mortality by 60 percent and opportunistic infections by 60 to 80 percent. This strategy has not only improved patients’ quality of life but is also responsible for a sixfold reduction in hospitalization rates and treatment costs for opportunistic infections. From 1997 to 2001, cost savings throughout Brazil were an estimated US $1.1 billion (de Vitoria, 2002; Galvao 2002; Piot, 2002; Teixeira, 2000).

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According to a new study in Sao Paulo, the ARV drug regimen adherence rate is 69 percent, with good compliance defined as taking 80 percent of the prescribed pills. The major factor associated with adherence is the quality of medical services (Teixeira, 2002).

Improving the Quality of Life of People Living with HIV and AIDS Rationale HIV/AIDS tends to affect every aspect of the lives of people infected and the people who are close to them. The care and support needs of people infected and affected by the disease require the involvement of a broad spectrum of services: medical, nutritional and psychosocial counseling, legal advice, social and faith-based support, recreation, community and organizational development, microcredit and income generation, and training on advocacy. With the growing number of persons infected and affected, governments and NGOs must integrate a variety of accessible services involving different sectors. The fact that health care systems in many parts of the developing world are overburdened and collapsing under the impact of HIV/AIDS creates a major challenge. HIV/AIDS prevention and care programing therefore needs to find extra support for conventional health care provision such as self-care to expand family and community involvement and establish links between different services. Furthermore, PLHA have been involved in the fight since the beginning of the epidemic. The 1994 UNAIDS Summit in Paris and the 2001 “Declaration of Commitment on HIV/ AIDS” by 42 countries acknowledged the significant contribution of PLHA and called for their greater involvement (GIPA) in the formulation and implementation of national programs. However, this principle fails to translate into practice in many HIV/AIDS organizations and at health systems policy level (Garmaise, 2003; UNAIDS-GIPA 2002). People living with HIV and AIDS continue to fight for a meaningful place in the development and implementation of appropriate programs and services. Strategic communication has a variety of roles to play, in this evolving scenario.

Formative Research Some key questions for formative research include: l l

What are the social demographics of the intended audiences (PLHA, providers, and caregivers)? What is the level of community/family knowledge and what are the prevailing attitudes towards HIV and AIDS (including stigma)?

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l l l

What social support networks and organizations exist? (e.g., Greater Involvement of People with HIV or AIDS [GIPA], National Association of People with AIDS [NAPWA]) To what extent does the audience access and use health services and other social support services? What are the major limitations of existing services for PLHA? What national and regional laws, policies, and guidelines exist on the rights of PLHA?

Audiences A variety of audiences need to be involved in communication activities: l l l l l l

PLHA OVC Family members Community leaders and organizations Peers and leaders in workplaces Health care and community service providers

At the community level, the majority of people living with HIV do not know they are HIVpositive, because they do not have access to testing. Therefore, in high prevalence countries, community programs may have to focus efforts on those with chronic diseases/TB within communities and use this level of disease burden as a proxy indicator/marker of PLHA.

Strategic Approaches Improving the quality of life of PLHA calls for a comprehensive multi-pronged initiative. Too often, past efforts have relied on disparate, community-based initiatives. Strategies shown to be effective in increasing the quality of life are outlined below (Busza, 2001; Olkkonen, 2002). The challenge for communication specialists is to develop and tailor a communication approach that links and combines as many of these strategies as possible. Advocacy for Supportive L aws, P olicies, and Guidelines: Supporting the legal framework Laws, Policies, available to protect PLHA from discrimination is essential to improving their quality of life. Preventing discrimination and stigma, therefore, needs a dual strategy. First, guidelines, laws, and internal policies need to define consequences for discrimination; and second, people need to be educated about rights and regulations. Laws, policies, and guidelines can enhance and send strong signals, but only if enforced. HIV/AIDS workplace programs are especially suited to combine education and enforcement. They offer a captive audience messages on stigma and connect rights and policies to the dayto-day realities of the workplace (Busza, 2001). Moreover, they diffuse such information

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through hierarchical work structures and peer educators, as well as to workers’ families and communities. Mass Communication Campaigns Educating the P ublic Public ublic: Mass media represent a powerful means to reduce stigma by “normalizing” HIV/AIDS as a disease that affects everyone. However, such programs need to avoid the mistakes made in the 1980s and early 1990s, namely, perpetuating stigma by singling out so-called “high-risk groups” and thereby reinforcing existing stereotypes. Mass media should support PLHA by focusing on the fact that no one is invulnerable, reducing stigma through role modeling of positive behavior, and promoting positive living. Comprehensive and strategic communication plans may include a mix of media ranging from TV/radio spots, drama, and variety shows; booklets and pamphlets; billboards and signs; community theater; and events involving the public appearances of opinion leaders and PLHA as role models. Part of the intervention should include the development of mass media programming guidelines and training of radio, TV, and print journalists on how to report on people infected in order to prevent stigma, misinformation, and mixed messages (Foreman, 2000; The African Women’s Media Center, n.d.). Counseling T raining for P roviders/Health W orkers: As has been noted earlier, stigma and Training Providers/Health Workers: discrimination experienced within the health sector continue to constitute the strongest barrier to service utilization. Service provider training in IPC/C skills, if carried out properly, improves the client’s trust in confidentiality and overall satisfaction in the quality of care. Training should include the rights of PLHA, confidentiality rules, counseling skills (psychosocial, nutrition, and hygiene), and home-based care. Counselors need information on referrals for further diagnosis, treatment of OIs and ART, if available, as well as palliative care. They also need regular supervision to prevent burnout and high turnover. Community Interventions Combining P revention and Care: Community care interventions Prevention involving everyday contact with PLHA reduce stigma by normalizing such contact, thereby reducing fears of infection through regular physical contact (Busza, 2001). Activities involve the development of training on home-based care needs and methods for family members and community volunteers. The training should include technical advice, as well as advice on dealing with stigma in the community and coping with imminent death. Youth group members may act as part-time volunteers for activities such as fetching water, cooking, or taking care of young children. In Zambia, for example, CARE-Zambia organized care and support workshops for youth from 30 school-based, anti-AIDS, and community clubs. They are linked to existing home-based care groups or local clinics (Esu-Williams et al., 2002). Community outreach, including public testimonies of people infected, can also be effective if prepared and timed well. In Thailand, training family and community volunteers in care issues had an impact on people’s knowledge and attitudes towards PLHA and greatly improved their quality of life, as measured through indicators of physical and mental well-being, family and social relationships, life satisfaction, and economic conditions (Siraprapasiri et al., 2002).

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Mobilization of P eople Infected for Self -help Activities: People living with HIV and People Self-help AIDS are frequently confronted with a lack of access to health services and service providers who stigmatize them. Their fear of stigmatization (perceived stigma) raises a further barrier to the access of regular health services. A strategy to address this problem is to train people infected in a variety of skills needed for negotiating their rights—health care, nutrition, and hygiene counseling—and for initiating self-care and positive living strategies such as the building of psychosocial self-help groups, which can increase their ability to face daily life in a proactive manner (Cornu et al., 2002). Activities may include IPC/C training, development of support materials, and training in psychosocial negotiation and advocacy skills, which strengthen their capacity to seek appropriate care and be assertive with providers. A support group in Bangkok, for example, developed a series of fact sheets to inform and challenge traditional views of health service providers and teach PLHA how to take an active role in interactions with medical personnel (Busza, 2001). Such groups can also participate in the integration of counseling training into existing support networks. A good resource for this work is The International HIV/AIDS Alliance’s Handbook on Access to HIV-Related Treatment (Dhaliwal et al., 2002). Involving R eligious and Community Opinion Leaders: Engaging opinion leaders such as Religious religious leaders to serve as community role models can greatly influence the social environment of PLHA. For example, in a project in Thailand, Buddhist monks visited those infected, demonstrated home-based care, and educated people on HIV and AIDS. Their activities contributed significantly to reducing stigma in the communities concerned (Busza, 2001; Olkkonen, 2002). Tools using religious scriptures already exist. The Bible, Torah, and Koran, as well as Buddhist and Hindu teachings, all have passages that can be interpreted to support tolerance, acceptance, and commitment for the care of PLHA. In Ghana, a multimedia campaign through TV and radio spots linked to community-based activities involves religious leaders as role models for compassionate attitudes towards those infected (Tweedie, 2001). This phase of the campaign is linked to an ongoing program that emphasizes the ABCs of prevention.

Key Issues to Communicate The examples below show how key issues may be positioned in message concepts. Of course, key issues to communicate in the proceeding sections of this chapter are also relevant to PLHA. However, such concepts have to be researched and adapted for particular country contexts. l l l

Address stigma through challenging the widely held “us” and “them” distinction; try to generate compassion instead of discrimination. Present PLHA and their networks as partners in prevention, care, and support. Address the human rights aspect of HIV and AIDS.

232 Strategic Communication in the HIV/AIDS Epidemic Box 5-10: HIV/AIDS W orkplace Interventions Workplace Workplace interventions usually start with an awareness-raising workshop to convince all groups that respecting human rights makes good “business sense” (Busza, 2001) and that “AIDS is everybody’s business” (a slogan used by Daimler/Chrysler, South Africa). After management gives its consent, a workplace task force can be formed, consisting of management/human resources, trade unions, health services, and public relations. This group develops a workplace policy on HIV and AIDS, including rights, benefits, and health insurance. This process constitutes an educational intervention in itself, which can have a remarkable multiplier effect through the task force members involved, who usually become great advocates for the program. The workplace policy should address the need to develop education and care programs, including care and support referrals (including VCT, TB and ART/HAART), use of company-owned public relation services for health promotion, and involvement of organizations for PLHA in peer education. In South Africa, for example, the GIPA Workplace Model places trained fieldworkers living openly with HIV/AIDS in selected companies and organizations in different sectors in order to set up, review, or enrich workplace policies and programs. This has added credibility to company HIV/ AIDS programs and created a supportive environment for those infected (UNAIDS-GIPA, 2002). Communication strategies for workplace programs should also integrate HIV and AIDS training into new employee orientation and on-the-job-training. Channels for workplace interventions include peer education, print support materials, community theater, and other community mobilization activities. For large organizations, mass media may prove useful to support these activities. Mass media can also support and encourage the overall involvement of workplace leadership in such programs. Sources: Department of Health, 1997; ILO, 2001; Mistry and Plumley, 2002; UNAIDS, 2002f; UNAIDS-GIPA, 2002 l l l l

Promote prevention and care for the general public, working with those infected to illustrate real-life experience with HIV and AIDS. Motivate self-respect and self-care. Promote health and support services for PLHA. Encourage assertiveness towards health providers.

Challenges and Lessons Learned Greater Involvement of PLHA: People living with HIV and AIDS are not only an important audience for information on HIV and AIDS but also should participate in communication program design, delivery, monitoring, and evaluation. They have a variety of work and life experiences to contribute if they are given the supportive environment, tools, and training to be true partners (Castle, 2002). Networks for PLHA now exist in the majority of countries at the local and national level. Such networks have also developed at regional and global levels and are increasingly visible at international HIV/AIDS conferences. The extent of their involvement varies from country to country. These groups in some countries have organized testing services, community-based and home-based care, and psychosocial and social support services. Their involvement can provide a role model for other infected people and

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can help empower them. It can also help to address stigma and discrimination and increase the effectiveness and credibility of prevention, care, and support programs (Garmaise, 2003; Horizons, 2002a). R esource Constraints: Organizations for PLHA are often limited in their capacity to organize due to lack of resources and skills. Self-help groups attempt to function despite the impact of HIV/AIDS on their members, who must cope with opportunistic infections, and eventually, death. Physical health restricts their involvement in program development and implementation. Health systems in most developing countries are collapsing under the burden of HIV and AIDS and may not be able to provide additional services such as home-based care, nutrition, and hygiene counseling. Many service providers lack knowledge on rights for those infected and often do not respect these rights. For example, many testing sites in health care facilities and workplaces still do not guarantee the confidentiality of HIV test results. These issues have a great impact on prevention and service utilization. Expectations of PLHA: Many people infected in developing countries are in dire financial need. Integrating income generating activities, micro-credit, and vocational skills training for those infected and those who care for them is crucial. NGOs and CBOs that want to involve PLHA need to be aware that many expect concrete benefits from their involvement (e.g., money, medication, food, support, opportunity to participate in income generation schemes). NGOs and CBOs also need to be able to offer support, appropriate training, as well as confidentiality and other workplace protection measures (International HIV/AIDS Alliance, 1999). The trend to combine and integrate prevention and care activities is especially important in high prevalence countries, where PLHA are much more visible. Prevention elements become more effective and innovative through forging new partnerships with care institutions. Male Involvement: Involving men in home-based care as volunteers has several advantages: men can talk about sexual infections to other men; male volunteers are able to bathe male clients; and male volunteers often become influential advocates for greater male involvement in care activities.

Case Study: The Commuter AIDS Information Project, South Africa Background: South Africa has 18.3 million daily commuters—77 percent by taxi and 33 percent by bus or trains. The HIV/AIDS and STD Directorate of the Department of Health recognized the great potential of reaching this group for HIV/AIDS interventions using dialogue with PLHA. They developed the South Africa Commuter AIDS Information Project.

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Audience and Strategy: The project, scheduled to run from October 2001 to September 2003, is conducted by a partnership of Comutanet (an advertising firm), DramAidE (a social drama NGO), the Centre for AIDS Development, Research and Evaluation (CADRE), and the National Association of PLHA (NAPWA). The project’s aim is to stimulate dialogue on HIV and AIDS among the South African commuter population, as well as to disseminate information, distribute condoms, and make referrals to appropriate services. A secondary, but equally important objective is to employ PLHA as peer educators, thus providing them with some income. For this purpose, Comutanet contributes 20 already established kiosks located in urban commuter sides across the country. During weekdays, trained HIV-positive people (referred to as NAPWA Commuter Educators or “NCEs”) provide leaflets, condoms, basic information, basic counseling, and referrals at each of these strategically located kiosks. Further organizational support is provided by NAPWA, which supervises activities; DramAidE, which provides training and support; and CADRE, which conducts monitoring, development, and evaluation activities. On a bimonthly basis, Comutanet promotes the project through signs on commuter taxis and advertising via a concept called “Star Music,” which involves the free distribution of audio tapes of popular and international music interspersed with short commercials for taxi drivers (Parker et al., 2002). R esults: Findings of a 2001 baseline study among commuters (n = 773, spanning nine sites in seven provinces) showed that the participants strongly endorsed the concept of the Commuter AIDS Information Project; 93 percent of respondents said they would use a service that provides face-to-face dialogue about HIV/AIDS at a Comutanet kiosk, 89 percent were interested in referral information, while 93 percent would be interested in receiving HIV/AIDS leaflets. Another 82 percent showed interest in obtaining condoms and 90 percent were interested in talking about HIV and AIDS with an HIV-positive person. The project itself is monitored via a weekly reporting form, which allows a centralized understanding of progress. Interaction with commuters on an individual and group basis is well received. NCEs have also reported positive responses to their promotion of service delivery to commuters. This includes increased confidence in interacting with commuters, perceptions of self-fulfillment gained in playing an important role, and satisfaction through dealing with other HIV-positive people or people who are affected by the disease. NCEs also interact with local clinics, support groups and schools to promote the project. Lessons Learned l l l l l

Care needs to be taken to establish a consistent supply of free condoms and leaflets (e.g., via the national Department of Health). NCEs need initial and follow-up training via workshops. Administrative issues, such as leave of NCEs, should be considered from the start. There have also been problems with work attendance at some sites, largely related to illness and death of the NCEs. The placing of HIV-positive people in taxi places has also involved challenges. NCEs initially reported being subjected to stigma, although this diminished as the project

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l

progressed. Open disclosure of status was also initially a source of discussion and disbelief amongst some commuters. Special attention needs to be given to providing the diverse locations of sites with supportive counseling and debriefing.

Source: Parker et al., 2002

Case Study: Orphans and Other Vulnerable Children in Malawi While program and policymakers initially identified their target group as “AIDS orphans,” they later broadened this group to include orphans and other vulnerable children (OVC). The intent was to avoid stigmatization and to discourage efforts that singled out AIDS orphans for special benefits while ignoring other vulnerable children in the same community. Consequently, measurements and estimates of OVC include multiple causes of death of parents. R ationale: OVC are perhaps the most tragic result of the HIV/AIDS epidemic. At the end of 2001, the US Census Bureau estimated that 13.4 million children worldwide under age 15 years had lost their mother or both parents as a result of AIDS and 90 percent of these children live in sub-Saharan Africa. USAID predicts this number will rise to 44 million by 2010 (Hunter and Williamson, 2000; McDermott and Sussman, 2002). Aside from the far-reaching impact of this situation on human relationships and socioeconomic structures, the trauma and hardship that OVC face cannot be overstated. Compared to children with both parents, orphans run a greater risk of being malnourished and exposed to economic hardships (e.g., by loss of inheritance). They are frequently denied education and health care and take on responsibility as heads of households. They suffer fear, social isolation, and stigma and they may experience neglect, sexual abuse, and exploitation such as trafficking and child labor (International HIV/AIDS Alliance, 2001). The need for a continuum of health and social services is even higher for infected and affected children than for adults. These services include food security or nutrition supplementation, adolescent and child health care, legal protection, psychosocial care, education assistance (vocational training), micro-credit and income generation. The more such services can be provided and included within community-based programs instead of orphanages, the better it is for the children affected (Hunter and Williamson, 2000). Beginning in 1991, Malawi has developed an integrated model to strengthen the protection and care of OVC within their extended families and communities. Audience and Strategy: Malawi has the eighth-highest HIV prevalence in the world, rising among 15 to 49-year olds from 13.8 percent in 1996 to 15.0 percent by the end of 2001 (UNAIDS, 2002a). This crisis has had a devastating effect on the country’s children. It is estimated that 21.5 percent of all Malawian children under 15 years of age have lost one or

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both parents and that at least 390,000 of them have been orphaned due to HIV/AIDS (Hunter, 2002). One of the government’s main strategies has been to promote and support communitybased programs to address the orphan crisis. Influenced by advocacy efforts of UNICEF and Save the Children, the government established the multi-sectoral National Orphans’ Care Task Force. In 1992, this group issued the National Orphans’ Care Guidelines focusing on sub-national and community efforts. Since 1995, the COPE project in Malawi has concentrated on building and supporting community-care coalitions. Once mobilized, these coalitions work with representatives from the community and district levels, including government officials, business leaders, faithbased leaders, and members from NGOs and CBOs. In collaboration with District and Community AIDS Coordinating Committees, CBOs set up childcare centers, ensuring that orphans attend and benefit from educational activities. Villagers, in turn, set up village AIDS committees to identify, monitor, and assist vulnerable families and children. The coalition and their subcommittees receive a broad array of training to help develop leadership and organization skills. Subsequently, they develop and implement a sustainable package of services to assist vulnerable children and adults to cope with their situations. Activities include support for orphans and their guardians, home-based care services, prevention education, food, and economic security, including micro-credit. With the participation of women and youth, they have set up communal gardens and AIDS clubs in schools. R esults: The COPE project is now reaching an estimated 9 percent of Malawi’s population. A systematic evaluation is planned. However, the project has undergone various reviews and process evaluations. Since all services and functions of the project were integrated into local structures, the program has been comparatively stable and sustainable, even after Save the Children’s involvement ended. A review for COPE’s first phase found that communities involved in the project had three characteristics, compared to communities not in the program: (i) COPE-trained village AIDS committees helped their communities understand the link between HIV/AIDS and their own behaviors, chronic illness, and the situation of orphans; (ii) COPE villagers do not blame the spread of HIV on outsiders; (iii) whereas non-intervention community respondents declared HIV and AIDS as a problem only of the affected families, COPE respondents emphasized the community’s responsibility to provide care and support to those infected and affected by HIV and AIDS (Hunter, 2002). Challenges and Lessons Learned: One of the challenges encountered during implementation was the lack of evaluation indicators on how to measure impact on the well-being of children. In addition, the project also struggled with the development of an adequate participatory evaluation plan (Coates, 2002; Hunter, 2002; McDermott and Sussman, 2002). Experience suggests that programs should: l l

Strengthen protection and care of OVC within their extended families and communities, including the economic coping capacities of affected families. Operate on the basis of enforcement of human and child rights, in contrast to a need-based approach. This encompasses motivation for more consistent and sustainable distribution of goods and services.

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Build children’s own capacity to realize their rights and fulfill their own needs. Engage youth in providing services, which positively affects their own preventive behaviors. Provide a whole range of services on the prevention–to–care continuum, which helps to reduce stigma by addressing both infected and uninfected community members.

Sources: Hunter, 2001; Hunter, 2002; Hunter and Williamson, 2000; McDermott and Sussman, 2002

Chapter 6

Selected Strategic Approaches Using Entertainment–Education for HIV/AIDS Prevention Rationale Entertainment has been an integral part of human life since the beginning of time. People have used paintings, songs, dance, and drama for enjoyment and to communicate social values and mores throughout history. Over the last century, entertainment has become the largest business in the world. The United States exports approximately $8 billion worth of entertainment products each year. The Indian film industry (coined “Bollywood”) is the largest in the world, churning out about 800 films per year that are watched by 3.5 million people everyday (Merchant, 1998). Even traditional entertainment methods—such as storytelling, drama, and song—have embraced new technologies to reach more and more people. Communication channels influence our knowledge and social behavior. A study in the US revealed that teens get a good deal of their education about sex and birth control from TV and movies (Alan Guttmacher Institute, 1996). However, they also learn questionable relationship values and watch thousands of murders and acts of violence, which have a proven effect on their own behavior (AAP, 1999). A common thread throughout this complex pattern of media channels and offerings is entertainment. Entertainment has infiltrated almost every aspect of our lives: television news, the multi-billion dollar ad industry, the Internet, museums and amusement parks, and retailing of consumer products. The challenge is to use entertainment’s powerful appeal for prosocial purposes. When development organizations use communication to reach audiences with social issues, they must compete against mainstream media to gain their clients’ attention. Entertainment provides a powerful means of reaching those audiences. An increasing number of prosocial development workers have joined talented artists, producers, writers, and directors in many different countries to design and develop programs that focus on disseminating positive values. Television and radio drama, variety and quiz shows, music concerts and music videos, community theater and puppet shows, storybooks, comic books and animated films—all of these formats have been used for social change objectives. Such programing goes under different names: Entertainment–Education (E–E),

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Enter–Educate, “edu-tainment,” and “info-tainment,” among others. The following definition fits all E–E labels: Entertainment–Education is the process of purposely designing and implementing a media message to both entertain and educate in order to increase audience members’ knowledge about an issue, create favorable attitudes, shift social norms, and change the overt behavior of individuals and communities. The larger purpose of entertainment– education programing is to contribute to the process of directed social change, which can occur at the individual, community, or societal level (Singhal and Rogers, 2003). E–E is appealing and powerful for three main reasons. First, human beings are natural storytellers and like to employ a narrative logic rather than didactic messages in processing discourse. Second, entertainment is a pleasurable activity; people like to be exposed to suspenseful drama, conflict, and its resolution. Third, E–E appeals to the emotions of audience members, even to the extent that they feel they have a personal relationship with the characters with which they identify most strongly (Kincaid, 2002; Singhal and Rogers, 2003). Perhaps it is this power that breaks the psychological barrier of silence on sensitive issues such as domestic violence and HIV/AIDS. It has been found that E–E listeners are more likely to discuss HIV prevention in personal networks once exposed to such programing, especially if their network partners were also listening (Mohammed, 2001). This is important, because the greatest barrier to combating HIV/AIDS has been silence.

Formative Research The process of developing effective E–E programs is not as simple as it may appear at face. It is not a matter of just asking entertainment artists to speak, play, or sing for a cause. To begin with, effective programing relies on extensive baseline research including: l l l l l

Media preferences Audience knowledge levels Perceptions and beliefs Attitudes and values Private and public uses of language for HIV and AIDS issues

Second, formative research is required to draft stories and scripts to measure: l l l l l

Comprehension, interest, and entertainment value Characterization Cultural sensitivity Conflict resolution or solution Potential to engage audiences in change activities (UNICEF, 1998)

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Audiences E–E has the strength to combine a variety of audiences. Since mass media is often the channel used for E–E interventions, the general audience might watch or listen to an entertaining serial drama, while special messages delivered through sub-plots are still reaching a particular audience for the educational part. A radio serial drama in Zambia, for example, was aimed at teaching health workers how to mobilize their communities. This distance education program used an E–E format. The general public listened as well and picked up knowledge about malaria, HIV/AIDS, and the problems health workers can have in providing services (ZIHPCOMM, 2000).

Strength of the Approach E–E programs represent a strong weapon in the worldwide fight against HIV/AIDS (Piotrow et al., 1992) because of E–E’s popular, personal, passionate, persuasive, and pervasive appeal (Piotrow et al., 1997). Effective social communication programs must include timely and relevant information and must provide motivation for people to act; they should address people’s ability to act within their social and physical environment, while taking into consideration the elements of the environment that enable or discourage change (McKee et al., 2000a). E–E can address all of these elements in different ways. E–E as a Means of Delivering T imely and R elevant Information on HIV T ransmission: Timely Relevant Transmission: Rather than providing the information in a didactic manner on a poster, leaflet, audio or video narration, or through an overworked fieldworker, E–E uses popular but unconventional sources, such as well-known movie stars. Because the source of the information is typically a person or set of characters that can command audience attention on issues, the audience is more likely to pay attention. To give an example, Wake up Africa, a four-country West African E–E project, uses music to reach young people with multiple HIV/AIDS messages: be aware of the risks of AIDS, minimize those risks by taking specific actions (practicing mutual fidelity, using condoms, knowing one’s HIV status), and be compassionate to people living with HIV/AIDS (FHA, 2000). E–E P rovides Direction and Motivation for P eople to Act on the Information P rovided: Provides People Provided: In addition to the song and its release as a commercial record, Wake up Africa program materials included a music video of the song, radio and television spots, and a 15-minute TV magazine program with the artists talking about the important issues in the song and what the issues mean to them as artists and citizens. This program was designed to reinforce knowledge and to motivate young people to act. Whereas real personalities and documentary style features have proven to be effective in HIV and AIDS prevention, drama is also a very powerful format of E–E: The essence of drama is confrontation. Confrontation generates emotion. Emotion is the motivational force that drives the action of the characters, leading to conflict and resolution. By means of involvement and identification, the confrontation and emotional

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Plate 6-1: Adolescents sing and dance at a DramAidE theater performance in South A frica. Africa. (Credit: Patrick Coleman/CCP)

response of the characters generate a corresponding emotional response in the audience. The empathic emotional response in the audience is the motivational force that induces members of the audience to reconceptualize the central problem depicted in the drama and to resolve it in a similar manner in their own lives (Kincaid, 2002). Box 6-1: Let’s Go W ith the T imes With Times An example of one of the longest running radio soaps is Twende na Wakati (Let’s Go with the Times) in Tanzania, which was first aired in 1991. At the time, poor knowledge, myths, and misconceptions about HIV and AIDS were still prevalent. In 1993, evaluation showed the soap opera’s effectiveness in influencing both men and women to reduce the number of their sexual partnerships, as well as increase condom use (Vaughan et al., 2000). A control group in other parts of the country that did not see the drama demonstrated no behavioral changes. However, after Twende na Wakati was broadcast in these areas in 1996, evaluation data again found increases in safer sex and family planning. Source: Smith, 2002

E–E Uses R ealistic Models of P eople with P ositive Behavioral Management Skills: Realistic People Positive Characters can demonstrate skills that help to solve problems and deal with adversity in a socially and culturally acceptable way. Well-designed E–E drama is not laden with social messages. Instead, it provides situations in which key characters interact and demonstrate increased risk perception, individual self-efficacy with respect to preventing HIV transmission, and collective efficacy in organizing to solve social problems (Bandura, 1997). Even the best role model has some behavioral issues through which he or she ends up in conflicts, which can then be solved before the audience’s eyes.

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Bandura (1997) argues that strategic communication can increase self-efficacy in several ways: (i) impart accurate information to increase awareness of health risks, (ii) teach social and self-management skills through modeling, (iii) offer extensive practice in these skills to increase the odds that people will perform them in real life situations, and (iv) provide social support to maintain behavior change. articular Social EnvironE–E Delivers Information, Motivation, and R ole Models in a P Role Particular ment: The environment has elements that may either enable or inhibit change. The immediate family, peers, and community surrounding the main characters, who are portrayed in a realistic manner, experience change as the drama unfolds. Likewise, service providers, political and religious leaders, teachers, and other social change agents who represent the wider environment interact with these characters in ways supportive to change. The whole community can be “modeled” to help change a social norm. In this way, E–E can be used as a tool for social or community mobilization, thereby acknowledging that sustainable behavior and social change depend on more than the individual. Box 6-2: Sara Saves Her F riend Friend In UNICEF’s animated video and comic book story “Sara Saves Her Friend,” produced in 1996, Sara’s friend Amina is tricked into getting drunk and is taken off by truck drivers who threaten sexual abuse. Sara’s problem-solving and negotiation skills and her ability to think critically and creatively enable her to organize her friends and go to the rescue to save Amina. HIV/AIDS messages do not dominate the plot, yet in any audience discussion of the story in the context of Africa today, avoiding HIV/AIDS is seen as the main theme. Source: UNICEF, 1997 Box 6-3: Soul City’s Impact on Domestic Violence Following a sequence in an episode of Soul City—a TV serial drama and part of a multimedia intervention addressing HIV/AIDS and other health and social issues from South Africa—evaluators observed the following: community members and bar patrons began to bang pots and bottles when they overheard or witnessed domestic violence and violence against women, indicating that this behavior was not an acceptable cultural norm any longer and community members are no longer willing to remain silent. This pot banging was modeled in a TV episode to depict how the community shifts from “silent collusion” with domestic violence to active opposition. Since such involvement had not been heard of in South Africa before, evaluators were able to use it as a marker associated with the impact of the episode. Soul City’s partnership with the National Network on Violence Against Women (NNVAW) and their collaboration in staging community activities contributed to this effect as well. Source: Soul City, 2000

E–E’s focus is not restricted to any specific area within the HIV/AIDS field. Serial dramas or soap operas on the radio or TV are a prime example of how to address multiple behaviors and social norms while capturing attention and emotions. They also allow for the introduction of a variety of issues (myths and misconceptions, the challenge of behavioral change and its

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maintenance, and the difficulty of talking about sexual issues with one’s partner). Moreover, they induce audience identification and change in a realistic social context.

Essential Elements The following are key program requirements for E–E: Creative Ability and T echnical Content Knowledge: E–E projects need creative ability to Technical produce first-rate entertainment that engages the audience and can compete with commercial media productions. Design and production teams need technical knowledge of the health or development problem and of those measures that can realistically and effectively be applied to address it. They also need in-depth familiarity with the intended audiences, their prevailing practices and reasons for them, as well as any possible incentives for or barriers to change. In addition, they must be culturally sensitive to the social norms that underlie specific behaviors. Participatory Development and Clear Decision-Making Structure: Design teams need the involvement of members of the intended audience in the formulation of programs— through careful formative research and consultation in program design—in order to ensure the relevance and appropriateness of the content. Consultation during the conceptualization, design, pre-production, production, post-production, and evaluation is crucial and will increase the sense of ownership and involvement with the program for all. The process must also include clarification on roles, responsibilities, and a decision-making structure. One way to attain this clarity and agreement is through a consensus-building or design workshop in which all of the partners convene for several days for a facilitated meeting to discuss and agree upon all the key points. At the end of the meeting, the designated representatives from each partner sign a document pledging to abide by what was agreed upon during the workshop (de Fossard, 1998). Patience: During the development and production of E–E interventions, time and patience are of essence to develop a coherent plan that all partners can understand and follow. Continuity: Furthermore, a sustained and continued presence of role model personalities is needed so that audiences can identify closely with the characters. E–E as P art of Broader P rograms and Supported by “Spin-Off ” Materials: In order for Part Programs E–E programs to reach their full potential in HIV/AIDS work, they should be part of broader health or development programs that address social norms such as gender inequity. Wherever possible, E–E programs should include multiple “spin-off” activities such as community theater, facilitated community and school events, live performances, music events, and the dissemination of additional information materials (Piotrow and de Fossard, 2003).

Challenges and Lessons Learned Developing and disseminating good E–E programs that meet these criteria is very demanding. Some of the common challenges and lessons learned are outlined below.

244 Strategic Communication in the HIV/AIDS Epidemic Box 6-4: Spin Off in W est A frica: Clés de la V ie West Africa: Vie Developed in West Africa by SFPS, Clés de la Vie is a radio soap opera on various RH topics targeting men and women of reproductive age. It was adapted into comic strips published as inserts in Planète Jeune, a youth magazine distributed in Francophone, Africa. SFPS is still distributing packages of tapes to NGOs for community-based activities and youth-friendly clinics. When the radio drama was broadcast a second time during 1998, program planners added a quiz at the beginning of each episode on a subject covered during that episode. The radio show hosts would give the answers at the end of the following episode, and people were encouraged to write in with their own answers. SFPS also added 30-second spots on topics covered during the episode. Source: FHA, n.d.

Partnerships: There are four types of E–E programs: (i) an entertainment company/producer develops one without any outside direction or assistance; (ii) an entertainment company/ producer is hired to design and produce an E–E product by a social development organization; (iii) an entertainment company/producer enters into a partnership with a social development organization to carry out an E–E project; and (iv) a social organization takes on the production of an E–E product on its own. Each approach has its advantages and disadvantages. The primary advantage of using an entertainment company/producer is that this arrangement requires no social or donor investment, and the producer is likely to have an excellent distribution network for the product. A potential disadvantage is that the quality of the social message may not be optimal or appropriate for the intended audiences and behavior objective. Also, this type of production generally is not linked to a community-based intervention that would enhance its impact. The second option has the advantage of a social development organization giving technical input into the content, thereby helping to ensure its relevance to the intended audience. But the company/producer agrees to produce a specific product with no commitment beyond the task. The third possible arrangement, a partnership between the entertainment producer and social organization, guarantees not only the appropriateness of the content but also the dissemination of the messages beyond its original format into community-level activities. The major disadvantage of this type of program is managing the partnership’s disparate goals. For example, profit versus social change, and determining how inevitable conflicts over these goals are to be resolved. The fourth scenario, in which a social organization produces E–E on its own, provides for the content and dissemination beyond the original product. However, most social organizations have limited creative talent to produce a compelling product and limited resources to enable the product to be disseminated through commercial distribution networks, thus limiting the potential for large numbers of people to be exposed to the social program. Management: The more complex the E–E project, the more complex the relationship of the partnership is likely to be. A TV drama series on HIV/AIDS for young adults, for instance, might have the following partners: production company, TV station, production team (producers, writers, directors, technical crew), actors, NGO/social organization, donor

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organization, and intended audience. There is something about the power and allure of entertainment that encourages people to try to go beyond their usual areas of expertise. Donor organizations want to write scripts; NGOs will tell directors how to edit a video. A challenge for the E–E program manager is to make everyone feel part of the process, yet leave the creativity to the professionals, including formative researchers. To this end, it is useful to involve every partner to some degree in the process through consultation or a participatory design workshop to clarify roles and a decision-making structure. For example, in developing an HIV/AIDS youth radio variety show, each partner can make suggestions on types of segments, tone, and language. The team then pretests these ideas with the intended audiences; the researchers analyze the results and share them with the other partners. The creative personnel translate the findings into a product using their technical expertise. Partners then are encouraged to critique the product, based upon their area of expertise. Cost: E–E can cost anywhere from US $10,000 to $10 million, depending on the scope of the program and the number of media engaged. Donors have funded most E–E programs although some programs such as Soul City in South Africa have achieved private sector buyin. The first phase of Soul City—including a 13-part TV series, a 60-part radio serial in eight African languages, 3 million booklets plus marketing, advertising, and public relations activities—cost about US $4 million (Singhal and Rogers, 2003). The investment has greatly increased with the production of four new series. UNICEF’s Sara Communication Initiative is an example of a program that was funded by a development agency and donors, which subsequently transitioned it into the private sector for publishing, marketing, and dissemination beyond UNICEF’s own programs, allowing for a continuation of efforts (McKee et al., 2003). This is one way of dealing with sustainability in E–E programs. Developing R egional E–E Materials: E–E products aimed at having a regional or global Regional appeal beyond the markets of any one country need to be designed through wide-scale consultation and research. It requires considerable time and resources to research and produce programs that resonate with audiences across cultures with similar social problems and to forge partnerships with the private sector, which can develop a sustainable delivery system. Singhal and Rogers (2003) cite a number of experiences in creating E–E materials that can be used across many national boundaries such as JHU/CCP’s popular rock music videos, Cuando Estemos Juntos (“When we are together”), the animated video Karate Kid by Street Kids International, and UNICEF’s Sara and Meena communication initiatives, as well as feature films such as those produced by the Zimbabwe-based filmmaker John Riber: “Consequences,” “It’s not Easy,” and “Yellow Card.” The above authors conclude, “If entertainment– education messages are designed to be shared across cultures, a tremendous cost-saving can be realized. In the past, too many entertainment–education interventions have been limited to a single nation” (Singhal and Rogers, 2003). Values and Ethics: Although opinions differ on the effects of entertainment media on adults, adolescents, and children, most agree that they can be both positive and negative. On the negative side, programs can provide negative role models, portray cultural or ethnic dominance by one group, perpetuate gender stereotyping, and increase exposure to violence that may lead to aggressive behavior. Researchers believe that the impact of media exposure is subtle,

246 Strategic Communication in the HIV/AIDS Epidemic Box 6-5: R egional E–E Using P opular Music Regional Popular Wake-Up A frica! is a mass-media HIV/AIDS prevention campaign targeting youth using popular Africa! culture. The centerpiece of the project is the “Wake-Up” song recorded by 24 of West and Central Africa’s most popular musicians. Additional materials include a music video, seven radio and TV spots of musician testimonials, a documentary video, and a guide on how to use the materials. Wake-Up has been broadcast in five countries through national media and regional radio. The materials have also been distributed through HIV/AIDS and youth NGOs that use them in community mobilization activities. Source: FHA, 2000

incremental, and cumulative (AAP, 1999). However, media has the potential for a number of positive benefits: stimulating new ideas, providing information and positive role models, fostering a sense of belonging to a community, and teaching basic social skills and cultural values. Any individual or organization planning to develop an E–E program, big or small, faces several ethical dilemmas. Some of the more common dilemmas are as follows: l

l

l

Who Determines Social Content? Often people in a given country or region have very diverse opinions on the value of the product or practice being promoted, such as promoting condom use for sexually active young people. Some government authorities, health workers, and young people may support the idea but religious groups and parent organizations may oppose it. One can mediate this situation by holding meetings, reviewing policies and regulations, and interviewing key stakeholders and members of the audiences in question. Through this process, the team can derive a “values grid” to guide the production process. Such a grid consists of a chart of issues to be tackled and the positive and negative values to be encouraged or discouraged in the program (Singhal and Rogers, 2003). The Balance between Entertainment and Education: A good E-E product must have strong entertainment value to engage the audience, not just “hit them on the head” with messages. However, if its educational content is too oblique or subtle, the audience will not catch it, understand it, or act upon it. One solution is to hold ancillary, community-level activities around an E-E product or develop a variety of support materials, which focus on its educational message. In the case of a TV drama series on HIV/AIDS, the program can set up youth viewing clubs in youth centers, schools, and community locations where community volunteers hold a facilitated discussion after viewing the program with young people. The downside to this strategy, however, is that it reaches only a fraction of the audience and is very costly. It may be useful, therefore, to prioritize those groups of young people who can most benefit by such a community-based intervention because of their immediate vulnerability. Dealing with Unintended Effects: Any entertainment producer, whether an E–E commercial practitioner or not, cannot completely control how an audience member will interpret his/her product. No matter how much pretesting and involvement of the intended audiences in the design and development, some people will react in

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l

unintended ways. Some people criticized the first worldwide music videos for a social issue, the Tatiana and Johnny video (JHU/CCP, 1985) that promoted abstinence among young people in 13 Latin American countries for being “too sexy” with the unintended effect of encouraging young people to have sex. The E–E program manager’s dilemma was to recognize this potential unintended effect and balance it against the need to engage the intended audience with role models with whom they could identify. Maintaining Quality: Even if the program uses a participatory design process and has the agreement of all parties, it may be difficult to get writers and directors to comply with formative research findings. Often, creative staff feel that they are in touch with their own culture. When feedback from potential audiences comes that is contrary to their own perceptions and perspectives, they may dismiss it and refuse to revise their script or scenes. When “big name” artists are involved, it is especially difficult (see Box 6-6).

Box 6-6: Scriptwriting for Meena In the development of UNICEF’s Meena stories on the South Asian girl child, the program tapped “Bollywood” film scriptwriters to produce stories for the series. However, these writers came up with character stereotypes and scenarios that reinforced the gender inequity the series was trying to address. After several tries, the project reverted to using a team approach to writing, with a lead creative person who was fully tuned in to the research process. Source: Carnegie, 2001

One method of overcoming this conflict is to involve top-level writers and artists as observers in the research process. If they are able to witness first-hand how intended audiences interpret their stories or draft programs, they may be more flexible in adopting the insights derived from research and making changes. In UNICEF’s Sara Communication Initiative, the principal writer also had research skills and was often humbled when villagers critiqued draft stories and offered changes. Stories evolved through an iterative process with the intended audience and the egos of key creative people often had to be put aside. Developing Community-based E–E: Community or youth theater is popular as an HIV/ AIDS prevention and care medium because it allows local control, people are often highly motivated to become involved, and it is relatively cheap and replicable. But replication is a key issue. Whereas core scripts may be written, pretested, revised, and staged accurately by a central team of artists, when they are played over and over by different theater groups or when central groups train others, very often a “systems loss” occurs. That is, the key messages and shape of the story, or at the very least the characterization of key parts, may change. For instance, in an HIV/AIDS prevention story, the actors may get a stronger audience response and involvement, including laughter, by reinforcing gender stereotypes in characterization or through improvisation of gender-insensitive lines and actions. Thus instead of communicating a desired social norm of gender equity, they end up communicating the opposite. Strategies for overcoming this problem include using standardized, printed scripts; a strong

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supervision system; and training activities that involve all stakeholders (including actors) in an educational process on the values and issues being communicated.

Increasing Local Capacity Means of Strengthening L ocal Capacity include: l l l l

Holding design workshops for the development of E–E interventions with all stakeholders, including artists and audience representatives. Training local radio and TV scriptwriters on the special requirements of E–E serial dramas written for social change. Continuous reviewing of E–E scripts by a review board of people to guarantee correct and appropriate information and dramatic scripting. Exchange with and sale of successful E–E interventions to other countries in the region, such as Soul City has done with their materials in Africa.

Box 6-7: Strengthening Capacity by T raining Ugandan P roducers on the Job Training Producers In September 2001, the DISH II Project teamed up with Mediae Trust, a Kenyan development communication organization, to produce the TV serial drama Centre 4. The 13-part series revolves around the lives of the health personnel running Centre 4: the new female doctor who tries to hold her ground, the jealous first medical officer, the stubborn lab technician, the nurses and their patients, friends, and families. Each program carries information on a specific health problem, including a couple of episodes on HIV and AIDS issues. The project had a dual purpose: (i) to influence health practices among viewers, and (ii) to train Ugandan producers, cameramen, and sound technicians to develop and shoot an international TV drama series. Source: DISH II, 2001

Case Study: The BBC Entertainment–Education Program in India Background: India has the second-highest number of HIV/AIDS cases in the world after South Africa. While less than 1 percent of the population between 15–44 years was estimated to be infected with HIV at the end of 2002, this rate already translates into 3.82 to 4.58 million PLHA due to India’s large population (ORG Centre for Social Research, 2002; UNAIDS, 2002a; UNAIDS, 2003). Officials initially believed transmission to be restricted to vulnerable population groups such as IDUs, CSWs and their clients, migrant workers, and truckers. The epidemic is now

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rapidly spreading among the general population and shifting from urban to rural areas (World Bank, 2002). New behavioral studies suggest, nevertheless, that consistent and targeted prevention efforts towards specific populations (such as CSWs and IDUs) have been successful in some states, showing increased knowledge levels about HIV and AIDS and an increase in condom use. The (national prevalence) survey shows clearly that where interventions have occurred and been sustained, behavioral change has been possible. But it also points to the difficulties in reaching some key groups (such as men who have sex with men) and large sections of the wider population (notably women living in rural areas) (UNAIDS, 2002a). India’s current challenge is to rapidly expand its HIV prevention programs to all population groups vulnerable to HIV and AIDS, including the young, the illiterate, and those in rural communities. Project Implementation: In support of India’s efforts to curb its HIV epidemic, the BBC World Service Trust (BBC World Service Trust, 2002) designed an E–E mass media campaign to promote HIV/AIDS behavioral change in five low prevalence states (Delhi, Haryana, Rajasthan, Uttaranchal, and Uttar Pradesh). The project planned to last for two years, includes 10 months of TV broadcasting and 14 months of radio broadcasting. Implemented in partnership with India’s National AIDS Control Organization (NACO), the national television service, Doordarshan, and All India Radio, the campaign’s objectives are to increase accurate knowledge of the causes and means of HIV prevention, promote attitudinal change towards prevention and PLHA, and to encourage behavioral change with regard to open discussion of sexual health issues. Based on formative research and a KAP/B baseline including data on media preferences and access, the team adopted a media-based E–E strategy with the following components: l l l l l

An interactive detective drama, Jasoos Vijay, that airs three times a week. A weekly reality-TV youth show called Haath Se Haath Milaa. Chat Chowk, a weekly radio phone-in program on personal issues. A variety of advertising spots running three times a day on both TV and radio for the entire duration of the campaign. A village-based interactive media program consisting of video screenings of Jasoos Vijay, discussion groups, booklets, and games.

Launched in July 2002, the TV detective series of 120 episodes ran for 10 months. In each episode, Jasoos Vijay (Detective Vijay) solves a case, ending with a truly dramatic cliffhanger. A famous TV and film celebrity, Om Puri, summarizes the plot in an epilogue and points at the major HIV/AIDS dilemmas. The interactive part consists of Om Puri encouraging viewers to respond to the major questions.. These questions then form the basis of regular interactive episodes, transmitted as part of the serial, in which viewers are filmed in their home environments discussing the possible culprits and their motives. Motivation is often

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related to the HIV/AIDS theme, and accurate information is then delivered on screen by a credible and attractive doctor figure.

Plate 6-2: Detective V ijay Vijay ijay,, a TV serial drama involving HIV/AIDS in India. (Credit: BBC World Service Trust)

Another interactively designed TV campaign element is Haath Se Haath Milaa (Hand in Hand Together), a reality show targeting the Indian youth. The program follows the lives of 80 young people—40 boys and 40 girls—who travel by bus across the five states targeted by the intervention. Buses with either two girls or two boys and a presenter on board at one time are equipped with beds, cooking facilities, and TV cameras. They visit a variety of cities, villages, temples, colleges, and the like. Designed as a journey, the youth encounter entertaining challenges during which they learn more about HIV and AIDS and how to protect themselves, about the people living with the disease, and how to buy a condom without being embarrassed. While living and traveling on their separate buses, the boys and girls regularly come together for interactions and amusing life skills exercises. All of the sequences are filmed and edited into a total of 40 episodes of 30 minutes each. Media fairs with local music performances and visits from celebrities contribute to exciting local events, while celebrity endorsements of HIV/AIDS prevention as part of each TV show and prize competitions keep the TV audiences interested (Singhal and Rogers, 2003). For areas with limited access to radio and TV, the Trust carried out 3,600 video screenings of Jasoos Vijay and complemented them with community-led discussions, games, and health camps. Chat Chowk, the weekly radio phone-in show, invites audience members to talk about sexual health and relationship issues. The two young hosts and a sexual health expert take a non-judgmental attitude intended especially to draw a cross-section of youth.

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In addition, the public service announcements cover HIV transmission, prevention, stigma, and care/support for PLHA, using celebrity endorsements, testimonials, drama, comedy, and music-based scripts. The program staff anticipate more than 2,000 individual broadcasts that will reach more than half of India’s population, as well as 3,600 video screenings for villages with limited access to radio and video. R esults: A midterm evaluation of the TV and radio spots, the TV drama, and the youth show revealed the following results. Exposure to the program formats was fairly high with approximately 61 percent of the surveyed respondents indicating that they had been exposed to at least one format of the campaign. Exposure to the TV spots at 51 percent was the highest. Conservative populationbased estimates of overall program reach in the project states are over 50 million. Over 85 percent of the surveyed individuals indicated that they had learned something new from the campaign, while exposure to multiple formats resulted in positive results. Approximately 11 percent of the individuals listening to or viewing one format indicated that they had taken some action, 13 percent of those exposed to two formats and 21 percent of those exposed to three formats reported that they had taken some action as a result of the campaign. Among the respondents who indicated that they had taken some action as a result of exposure to the TV spot, 25 percent reported to have used condoms, 35 percent discussed condom use, and 15 percent consulted a doctor for their STI symptoms. Another 40 percent intended to take action in the next six months. Over 40 percent of respondents who took action discussed condom use with friends and family, over 20 percent consulted a doctor for STI symptoms, and over 20 percent used a condom. Another 15 percent encouraged discussion among friends/family on risks involved in having unprotected sex with multiple partners. Individuals who were exposed to the campaign were at least 16 times more likely to be aware of HIV/AIDS in comparison to those who were not exposed to the campaign. Similarly, the odds of knowledge about condoms and STIs and discussion about the same were significantly higher among individuals exposed to the campaign (Sood, 2002).

Challenges/Lessons Learned Mass Media Challenge: Mass media interventions are subject to challenge and threat from politicians, more so in developing countries that have relatively weaker bureaucracies than the West. One component of the BBC WST campaign (TV spots) was taken off the air at the beginning of 2003 because local politicians objected to the promotion of condoms as a means of protection against disease. Four-fifths of the campaign remained on air, but the TV spots were the single most influential intervention. Ministers were not inclined to accept research findings on the campaign, preferring to rely on their own instincts. Cost-effectiveness: Mass media campaigns with strong reach are a cost-effective way of promoting behavioral change (e.g., BBC WST calculates that it spent £0.12 for every person

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positively affected by the TV spots and £0.37 for every person positively affected by the TV drama). The More Outputs, the More Impact: For example, the midterm study showed that respondents who said they had “discussed messages” with friends and/or family members rose from 24 percent with exposure to one output, to 33 percent with exposure to two outputs, to 47 percent with exposure to three outputs. Interactive F ormats: Interactive formats are associated with strong impact results: for Formats: example, every media output in this project has been interactive in nature, with incentives given for audiences to write to the program stars and producers as often as possible. Source: Sood, 2002

Peer Education Rationale Worldwide peer education is one of the most widely used strategies in combating the HIV and AIDS pandemic. While few programs have been rigorously evaluated, existing data suggest that peer education programs can have a positive impact on increasing knowledge, partner discussion of condom use, risk perception and the self-efficacy to change that risk, as well as decreasing STI incidence and high-risk sexual behavior (Horizons, 2001c). Peer education is defined as an approach that involves training and supporting members of a given group to affect change among members of the same group (Horizons, 2001c). The actual mechanisms of implementation vary widely, as does the meaning of “peer” and “education.” For example, peer education can involve youth talking to youth, workers at a CocaCola plant leading health education sessions for fellow workers, or commercial sex workers strategizing together on how to get their clients to use condoms. Peer education programs can include educators who conduct health talks in groups, peer counselors who facilitate decision-making with clients one-on-one, peer social marketers who sell condoms or other socially marketed products, and peer-led E–E activities (see previous section) such as theater performances, radio programs, soccer matches, and newsletters. Peer counselors, in comparison, willingly have gone through counseling training, and they advise their peers in oneon-one sessions as well as refer them to other providers. Peer education is an effective approach in disseminating important HIV and AIDS messages. The approach has many challenges but also much potential. It clearly represents an important mechanism for reaching specific subgroups with lifesaving messages about HIV and AIDS prevention, as well as supporting those infected.

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Formative Research As in any approach, the design of a peer education project should be based on formative research to understand the intended audience’s knowledge, attitudes, practices, and needs, as well as those of the key stakeholders and gatekeepers. Program planners need to consider what other approaches can be used to complement or enhance the peer education component. Planners should also inventory the types of health and social services provided, as well as their quality. Planners should also formulate criteria for selecting peer educators and develop a strategy for recruiting them. They should develop these criteria as well as a manageable scope of work based on research of or in partnership with the intended audience and other stakeholders. It is important to determine, up-front, the attributes of the peers who are considered trusted sources of information and who have credibility with the audience one is trying to reach. Box 6-8: T argeted R ecruitment of P eer Educators is Important Targeted Recruitment Peer Evaluation of a peer education program for truck drivers and their sexual partners in Tanzania revealed that the following criteria are important: peer educators had to have social skills, be accepted and respected by the group, be able to discuss sensitive issues openly, be friendly and kind, be able to attract peers by being a role model, and be interested in donating time to community service (Laukamm-Josten et al., 2000). In addition, peer educators needed to be non-judgmental and able to maintain client confidentiality. Source: See citations mentioned in the box.

Audiences Peer educators can be recruited from almost any group vulnerable to HIV infection: l l l l l l l l l

truck drivers factory workers in-school children street children hairdressers and bar owners women’s societies nurses and health workers sex workers injection drug users

However, work with audiences engaging in “illicit” activities—such as drug use or sex work— will require complex strategies for recruiting peer educators compared to youth work. Building relationships and trust with key informants in the IDU community will help facilitate the task. The physical proximity of the group also facilitates recruitment. Finding factory workers

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who can be trained and consistently participate in the program will be easier than working with street children who are always moving. If stigma is high in a given setting, recruiting peer educators who are willing to work on HIV/AIDS programs may be difficult.

Strength of the Approach Peer education has a number of unique characteristics that explain why it is so widely used. It facilitates change in social norms, not just individual behavior. The mode of implementation is flexible and can be adapted to specific situations. Implementers are part of and thus can communicate effectively with the intended audience. And finally, peer education can create demand for services. Changing Social Norms: Peer education programs can make an important contribution to changing social norms by providing a forum for dialogue and debate and by empowering groups to take more control over their health status. Peer education programs enable peer groups to collectively examine the conditions and consequences of their risk behavior, to negotiate and reformulate norms for sexual health that are more supportive than existing ones, and to provide positive mutual support for the healthier behaviors (Campbell, 2000). Behavior occurs within a context, and conformity within a peer group can play an important role in behavioral decision-making. People are more likely to change their behavior if they see or even perceive that their liked and trusted peers are changing theirs. This is particularly true among young people who place a premium on the opinions of their peers. In Ghana, a study of youth peer education projects found that those young people who believed their friends were protecting themselves against AIDS were significantly more likely to take protective action themselves (FOCUS on Young Adults, 1997). Thus, peer educators can serve as role models for the wider group. Implementers and the Intended Audience are One and the Same: Peer educators themselves come from the intended audience one is trying to reach. Thus they speak the same language (literally and figuratively), understand the realities of the people whose behavior they are trying to change, and know where to reach their audience. Among many groups, receiving information from someone “just like me” is seen as more credible than from an outside source or health expert. (In designing a peer education program, however, planners must realize the many subtle but important differences that exist within peer groups, and they must conduct formative research to make sure the peer educators are credible to the group they are trying to reach.) Being trained and working as a peer educator enables the person to evaluate his/her own behavior and make appropriate changes. In a study of 21 youth peer education projects, 95 percent of the peer educators stated they made changes in their own lives and behavior (FOCUS on Young Adults, 1997). Following training as peer educators, young women in Thailand expressed confidence that they would “be sure to protect themselves from getting AIDS in the future” (Cash et al., 1997). A Flexible Approach: Peer education can be implemented in a variety of ways, depending on the needs of the community and the resources of the program. Peer educators can be in a

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fixed place holding regularly scheduled talks or events, such as clinics, schools, army bases, or factories; they can hold enter–educational events open to the wider community; or they can do more subtle outreach with hard-to-reach groups such as sex workers, MSM, and IDUs. Peer education can serve as one component of a larger strategy with many interventions, it can function as the centerpiece around which the other components revolve, or it can stand on its own. Creating a Direct Demand for Services: Peer educators can promote services based on what they know is important to their peer group, be it confidentiality, respectful service, or other factors. They can talk directly about their own experiences and offer to accompany people if they are going to a clinic for the first time. Peer counselors can be based at clinics or staff hotlines. Equally important is that peer educators can monitor the services they are promoting to ensure that the services remain appropriate for their constituents. This issue is particularly important when it comes to youth or others who may be disenfranchised from the health system. Often, youth are not made to feel welcome at family planning, STI, or VCT centers, but will frequent those centers with the “youth seal of approval.” Sex workers who need treatment for STIs may feel unwelcome at sites where they feel they may be judged, but will go to the ones that have been promoted as friendly through word of mouth.

Essential Elements While they may differ in how they are implemented, all peer education programs need to contain the following elements (involving peer educators in determining the particulars of each of these aspects is crucial, as their buy-in and commitment form the foundation of any program’s success): Training of P eer Educators: Training is an essential part of a peer education program and Peer should be included as a healthy portion of the budget. Training for peer educators should be comprehensive and cover facts about HIV and AIDS, communication techniques, and specific skills. Curriculum on HIV and AIDS should include knowing how the virus is transmitted, how to avoid getting it, the relationship of STIs and HIV, and other issues around sexual behavior. Communication issues to be tackled include how to engage an audience, how to deal with sensitive issues and conflict, and how to disseminate information in a participatory manner so the audience can dialogue and debate and come to their own conclusions. It is also important to include sessions on better understanding how gender affects discussion and decision-making as well as the use of alcohol and other drugs. In addition, peer educators need skills to be able to demonstrate proper condom use, negotiation skills, and (if appropriate) needle hygiene. Training for peer educators performing counseling should involve in-depth sessions on interpersonal communication. Supervision: Peer educators need ongoing feedback, guidance, and motivation to carry out their work. Programs can provide this supervision through regularly-conducted meetings with supervisors and in-group discussions where peer educators can discuss challenges faced, rewarding experiences, and lessons learned. Supervision can take different forms, including

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direct observation, group discussion, and the review and elaboration of workplans. It is important that supervisors understand the milieu and constraints in which the peer educators are working so as to give them relevant and useful guidance. Supervision for peer counselors (specifically trained in counseling) is particularly important because they may need immediate feedback after meeting with a client who had an issue they were unsure of how to handle. Motivation/Compensation: Since most peer educators work as volunteers or receive very small stipends, other forms of motivation and compensation need to be found to sustain their involvement in the program once the initial enthusiasm wears off. Compensation should be based on the availability of resources and local values on monetary incentives to avoid creating social distance between the peer educator and the intended audience (Horizons, 2001c). Providing T-shirts or some other type of uniform, giving identification cards, holding recognition ceremonies, providing additional training and advancement opportunities, giving free medical care, and holding friendly competitions with awarded prizes are possible motivation tools. Box 6-9: The T anZam Highway P eer Educators TanZam Peer A peer education project in Tanzania along the TanZam highway at seven truck stops underscores the interrelatedness and importance of providing ongoing training, motivation, and supervision. The program staff trained sex workers to deliver messages to their peers and their clients (truck drivers). The training program used a phased-in approach with an initial week-long orientation session covering HIV transmission and prevention, use of monitoring forms, how-to demonstrations of correct condom use, and means to improve condom negotiation skills. Six months later, zonal workshops provided additional training on STD risk identification, promotion of treatment-seeking behavior, elementary counseling, and condom social marketing skills. After one year, a five-day workshop was held in a central location to facilitate exchange among the peer educators and complete the training, expanding into areas such as the cultural influences on HIV risk and the social and economic impact of AIDS. In between the trainings, Health Behavior Officers (HBOs) visited the peer educators at least once a month to give on-site training and offer support. During the intensive phase that which lasted 18 months, the proportion of truck drivers under 25 years of age who perceived themselves at risk for HIV increased significantly as did the proportion of men and women who carried condoms and used them. During the 24month maintenance phase, the program reduced training by almost two-thirds and cut back supervision visits to once a quarter. An evaluation of the project after the maintenance phase found that knowledge levels and reported condom use both declined (although they were still higher than the pre-intervention baseline), suggesting that the peer educators had become less motivated to carry out their work and less active. Source: Laukamm-Josten et al., 2000

Activities to Carry Out, Materials to Use and Distribute: Once trained, peer educators need a workplan with an elaboration of specific activities to carry out to disseminate the messages they are trying to get across. The appropriate venues for these activities will depend on the audiences being reached and locations for project implementation. Peer educators

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also need support materials to help them deliver their messages, such as posters, pamphlets, condoms, and, where appropriate, clean needles. Condoms may be distributed or sold but it is important to ensure a steady supply to avoid creating an expectation that cannot be fulfilled. The distribution of clean needles will depend on local laws and restrictions, but should be explored as an option in an IDU peer education program. Services to P romote: An integral aspect of behavior change regarding HIV and AIDS is Promote: changing the social norm around the use of services, including VCT, STI sites, family planning clinics, hotlines, and care and support services for those already infected. Peer educators must have appropriate sites to which to refer people, and those services should be in a position to accept an increased caseload.

Challenges and Lessons Learned Sustaining the P rogram L ong T erm: Like any approach, peer education needs adequate Program Long Term: and ongoing resources to continue its activities, such as ongoing training, regular supervision, and some type of consistent compensation. Shortchanging any of these can lead to deterioration in the quality of the program and loss of the peer educators themselves. High turnover of peer educators can result from burnout, the need to find a paying job, and illness. As stated, since most peer educators work as volunteers and/or have regular full-time jobs, many may need to seek paid employment to support themselves, or find it too difficult to continue doing “two jobs.” The Complexity of the T raining Needs: Peer educators need to be trained in a variety of Training areas to be effective. In many settings, the peer educators have minimal education or low literacy. Therefore, a challenge is to develop training curricula and materials that can convey complex ideas in a relatively simple manner and that will give the peer educators the communication skills to disseminate these ideas to others. Peer counselors, for example, also need longer and more specialized counseling training, whereas peer educators can usually fulfill their role with less training. To date, very little research has been done to identify the specific training needs of peer educators or how to standardize the training. The Special Needs of HIV -P ositive and PLHA P eer Educators: By being so publicly HIV-P -Positive Peer open about their status, HIV-positive peer educators may experience the negative effects of pervasive stigma that still surrounds the disease. Hence, they may need protection or very strong and vocal support for their work from political, religious, and community leaders. An additional issue to consider is the role PLHA peer educators and counselors can play in home-based visits; these settings may expose them to opportunistic infections that can jeopardize their health (Horizons, 2001c). Finally, programs will have to decide if the HIVpositive peer educators will be given additional compensation in order to buy food or medicines. The Need to Maintain Confidentiality: This issue is particularly relevant for peer counselors who meet one-on-one with clients; but it is also relevant to peer educators who may find people approaching them to talk about their status, getting tested, and where to find support

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if they are HIV-positive. Since peer educators and counselors often work in a relatively small or confined communities, the need to guard information they receive is crucial. Spreading news of a betrayed confidence can destroy the credibility of an entire program, not to mention the devastating personal effects such a breech of confidence may have on the aggrieved individual. Involvement of P eer Educators: Involving peer educators in every stage of the project, Peer from design, to implementation, to evaluation, will serve to create a sense of ownership in the program, leading to greater impact and longevity. Scaling Up: Scaling-up works best when using a systems approach, which means using institutions that already exist, such as anti-AIDS clubs or church groups, or by institutionalizing the program in schools or workplaces so that funding for the program can be budgeted as part of annual operating costs. Peer Education at the W orkplace: When advocating with private enterprises for HIV and Workplace: AIDS peer education programs, program staff should include data about how the programs will benefit them in the short, mid- and long-term. Companies are interested in the bottom line (profits) and information should be presented on how the program intervention can increase productivity. Gender Issues: Including a gender perspective as part of peer education training and outreach activities can enable young men and women to recognize the obstacles that notions of “masculinity” and “femininity” present to the practice of safe sex, how sex and sexuality are socially constructed, and how they can break down that construct and begin to create a healthier one.

Increasing Local Capacity Local capacity can be built through ongoing training of the peer educators, by working to institutionalize programs, and increasing organizations’ abilities to evaluate their programs and disseminate the results. By training peer educators in HIV and AIDS, communication, and participatory approaches, programs are helping to increase the capacity of a cadre of committed educators who can then educate others. Even when projects are closed or peer educators terminate their services, these individuals can continue to disseminate health messages through conversations with their friends, family members, and wider peer group. Evidence indicates that working as a peer educator can yield long-term benefits such as an ongoing commitment to responsible reproductive health behavior, leadership potential, useful employment experience, and personal development (Wolf et al., 2000). Peer educators can be trained as trainers or in program management, advocacy, and fundraising, so they can sustain the work of the program and seek ways to scale it up. Peer education done on a pilot or ad hoc basis can become institutionalized in certain settings such as schools, workplaces, and health clinics, thus increasing the capacity of these organizations to serve the needs of their constituents.

Selected Strategic Approaches 259 Box 6-10: T ips for Success in P eer Education Tips Peer l

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Include gatekeepers, parents, community leaders, trade unions, and company managers from the very beginning, as their support will be crucial to the program’s success—or their lack of support the reason for its failure. Build in the probability of high turnover in the planning stage. Train more peer educators than needed initially, and if the program has a limited time frame, focus resources on retaining the peers that have been trained. Provide refresher training that continues to increase the peer educators’ capacity and skills, is based on their experiences in the field, and responds to their needs. In the long term, when appropriate, peer educators should be offered training that includes opportunities for advancement to become supervisors or service providers. Provide peer educators with continuous motivation and support. Motivate peer educators to write up timely (weekly or monthly, depending on the setting) workplans that can be reviewed and discussed with their supervisors. Such reports can be especially useful in the beginning stages of a program to facilitate supervision.

Despite the wide use of the peer education approach, very few peer education programs have been evaluated beyond analyzing process indicators (e.g., the number of people reached, number of condoms distributed, number of sessions held). One exception is the review conducted by Speizer et al. (2001) under the FOCUS Project. Programs need to build local capacity so that groups can better evaluate their programs, enabling them to share their experiences, replicate programs, and scale them up. More research is needed on what aspects of peer education work best, how one type compares to another, how it can be improved, and how to standardize best practices.

Case Study: Peer Education Among Factory Workers in Thailand Background: Thailand was the first Asian country to recognize that it had a major HIV and AIDS crisis (UNAIDS, 2000g). After a short period of denial, the government organized a national response program by mobilizing the cooperation of all sectors of society, allowing various sectors to help determine the direction of prevention efforts. While most HIV transmission in the 1990s occurred through commercial sex and injection drug use, the main modes of transmission have been changing (UNAIDS, 2002g). Responsible for this shift is the country’s remarkable and government-enforced “100 percent condom program” for all commercial and casual sexual contacts. This policy substantially changed the levels of risk behaviors for sex work (UNAIDS, 2000g). For example, the percentage of adult men visiting (male and female) sex workers has fallen from almost 25 percent of the population to about 10 percent (UNAIDS, 2002g), and condom use during those visits has

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become the norm. Current overall HIV prevalence is about 1.8 percent but there is still a considerable rate of new HIV infections in Thailand (close to 30,000 infections per year), half of which occur among the wives and sexual partners of men who were infected years ago. Unsafe sex among young Thais also appears to be on the increase (UNAIDS, 2002g). Moreover, due to the 1997 economic crisis, the reduced public HIV/AIDS funding is increasingly used to care for those who are sick rather than to support prevention initiatives. UNAIDS therefore calls for expansion and revitalization of proven prevention strategies. One of these proven strategies has been a peer education model program for single factory workers in the North of Thailand. In comparison to current AIDS workplace programs which often use peer education as one intervention component within an integrated strategy, this model was designed as a prototype to test the effectiveness of peer education with a gender perspective and a focus on enhancing communication about HIV and AIDS. Initiated as an intervention study between 1994 and 1996 by Chang Mai University and the USAID-sponsored International Center for Research on Women (ICRW), the program was expanded to 15 factories with approximately 1,500 adolescent workers in the same region. The MOH also subsidized factories in other regions to start the program, and even the Thai military has reproduced the materials and incorporated the peer education model into their HIV/AIDS prevention program. Audience and Strategy: Single young women and men (ages 15–26 years) who migrated from their homes for employment and worked as unskilled laborers in four factories were involved in peer leader (educator) training. Both female and male peer educators participated in training over a three-month period in order to conduct peer education activities with single sex groups and mixed-sex groups at work. The training was highly interactive and geared towards the development of communication skills. Peer leaders identified and addressed barriers to communication, learned facts about HIV and AIDS, and became proficient in using a condom. In addition, trainees learned how to lead group discussions and role-play, and developed their own activity curricula in small group work. The training ended with the award of a certificate. Peer leaders were then asked to gather a minimum of 10 participants for their groups, recruited from their friendship network. Meanwhile, findings from formative research (focus groups) were used to develop a variety of educational print materials to be used by the peer leaders. Two comics, DANG and POO PI TAK, and a romantic storybook included male and female characters (and a flying condom) whose attitudes and behaviors reflected prevailing gender norms about communication, sex, and HIV prevention (Cash et al., 1997) and addressed issues such as alcohol and drug use. Two interactive and self-guided manuals were also created to increase knowledge and understanding about HIV/AIDS and how to communicate. R esults: Pre- and post-intervention evaluation interviews with all participants (peer leaders and their group participants) demonstrated an improved ability of the respondents to: (i) explain factors contributing to sexual risk, (ii) articulate prevention and risk-reduction strategies in a detailed and varied manner, (iii) illustrate why it is important to communicate about

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safer sex and how to bring this topic up with a partner, and (iv) understand how traditional gender roles inhibit HIV-related communication (Cash et al., 1997). Additionally, participants had less concerns about the social consequences of talking about sexuality and HIV/AIDS and more than three-quarters of the respondents felt it was appropriate for a girl to ask a boy about his past sexual experiences. When researchers compared the performance of the single sex and mixed-sex peer groups, they found that young women felt more capable of expressing their opinions and of asking questions in the girls-only groups. Special learning environments and targeted communication for women apparently paid off (Cash et al., 1997; UNAIDS/Horizons, 2000).

Challenges and Lessons Learned l

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Stressing communication skills and addressing the barriers to communication on HIV and AIDS that young adults face also improves communication with partners, other peers, the family, and the community at large. HIV/AIDS education needs to acknowledge the contradictions that gender-based norms pose for young women with regard to AIDS prevention. Participatory learning methods, such as group discussions, problem-solving activities, and role-playing were very effective, especially in influencing the group norms among the peer leaders themselves. Mixed-sex groups were successful when the peer leaders knew each other beforehand. Youth participating in groups who did not know each other were more interested in socializing than in any type of educational activity. In these groups, male leaders often dominated. Interviews among unmarried couples showed, nevertheless, that they did not discuss condom use within a steady relationship, despite its being mentioned in the intervention. Young adults within a relationship obviously use HIV/AIDS risk-reduction strategies other than condoms: HIV testing, abstinence, monitoring of their own alcohol and drug intake, and fidelity (Cash et al., 1997). Girls, in particular, need socially legitimate means to discuss HIV/AIDS and safer sex with their partners, families, and the community. Being a trained and certified peer leader can provide this credibility. Factory management needs to participate in the prevention program in order for it to be effective.

Source: Cash et al., 1997; UNAIDS/Horizons, 2000

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Case Study: Peer Educators at Mumias Sugar Company in Kenya Background: The Ministry of Health estimates that 1.4 million adult Kenyans may have HIV. In a recent report entitled HIV/AIDS and the Commercial Agricultural Sector of Kenya, the Food and Agriculture Organization (FAO) notes that HIV/AIDS poses a critical challenge to the socio-economic structure of the western province’s sugar belt. The report states that since 1995–97, sugar factories have each lost an average of 8,007 person days due to AIDSrelated illnesses. Loss of experienced personnel, replacement and training costs, reduced productivity, and increased medical expenditures threaten the viability of the western province’s agro-industries. The western province shows a particular socio-cultural vulnerability to HIV infection. The province’s many factories (sugar and paper, for example) attract large numbers of men separated from their families and are surrounded by low-income communities with disproportionate numbers of single women. This situation has led to high-risk behaviors. Because of these factors and the high HIV prevalence in western province, FHI, with funding from USAID under the IMPACT project, is implementing a comprehensive prevention, care, and support project in selected communities within the province. Target populations for this program include sex workers, in- and out-of-school youth, and, most importantly, men and women in the workplace and surrounding communities. Components of the program include behavior change communication, clinic upgrading for STI service provision, HIV/AIDS care, PMTCT, TB diagnostic centers, and VCT services, as well as home-based care and support for orphans and other vulnerable children. Audience and Strategy: The Family Planning Association of Kenya (FPAK) started working with FHI in 1999 as one of more than a dozen organizations in the country helping to achieve comprehensive programing. FPAK is implementing an STI/HIV peer education program in the workplace and the surrounding communities in three sites in the western province as part of the IMPACT comprehensive HIV program. The largest site is the Mumias Sugar Company. The program includes outreach, peer education both within and outside the factory, condom promotion and distribution, and referrals to other partners for a variety of services that include STI treatment and voluntary counseling and testing. To achieve a greater impact, FPAK collaborates with the community and work sites to identify peer educators based on their commitment and acceptability, and trains them to conduct community outreach targeting their workmates. So far they have restricted their services to cover only their colleagues. The outreach consists of individual STI/HIV prevention and group participatory meetings. Individual outreach occurs on an informal, ad hoc basis as opportunities arise within each community. Peer educators provide a minimum of five individual sessions per month in each community and workplace. The peer educators also organize one group meeting per week. These meetings are based on a participatory approach and use discovery learning materials resulting in active participation and vigorous debate. Other approaches used include one-minute role-plays, picture codes, participatory games,

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experience sharing, and short skits. In addition, the Mumias Sugar peer educators collaborate with a national interactive radio effort, forming peer radio groups to listen to a radio soap opera and offer feedback through a “response cell.” A referral infrastructure ensures that the peer educators make effective referrals to locally upgraded clinics and to other health facilities located within the project area. FPAK also provides support and supervision to the community peer educators through bimonthly refresher training. R esults: From October to December 2001 alone, peer education in the workplace activities at the Mumias Sugar plant had a total of 2,687 participants attending their group meetings (2,269 men and 418 women). At these meetings, 12,307 condoms were distributed. Peer educators individually reached 879 males and 458 females and distributed a total of an additional 5,998 condoms. During this period, the number of people being referred for VCT and STI treatments increased. Lessons Learned: Despite its successes, the Mumias Sugar Company Project faces major challenges, such as maintaining the same peer educators over an extended period of time. Many of them have other responsibilities, and it is difficult to balance these with the job duties of a peer educator. Keeping peer educators motivated has also been a challenge because once the initial excitement is over, the task of changing the behaviors of their target audience and the responsibilities of being a peer educator can seem daunting. The past two and a half years of the project have revealed other important lessons. Buy-in of the company’s management is crucial. They act as both the key stakeholders and gatekeepers within the project, and without their support the project would not be as effective. It is also necessary to provide technical assistance to the workplace in the selection of peer educators. Technical assistance helps to ensure that the peer educators have the right qualities needed to lead effective, participatory, and quality educational sessions. Source: FHI (2002d); FHI (2003a)

Telephone Hotlines Rationale Telephone hotlines are an effective way to provide counseling, disseminate information, refer people to services, and provide a supportive friend. They have operated in many countries for a variety of purposes such as providing information on family planning, reproductive and sexual health, HIV/AIDS, human rights, and acting as crisis lines. Hotlines are specialized telephone services that have become a popular intervention strategy because they are a costeffective way of disseminating information and providing support to many people quickly.

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Hotlines do not operate in a vacuum. They rely on a network of other organizations that offer face-to-face counseling, medical services, and access to more information on the subject (FOCUS on Young Adults, 1999).

Plate 6-3: HIV/AIDS telephone hotline poster from Nigeria’s Y outh Empowerment F oundation (YEF). Youth Foundation (Credit: YEF/CCP)

Hotlines can be large, multi-line, stand-alone centers where people can call in from anywhere in the country and receive counseling and referral services tailored to their geographic area. Alternatively, they can be one-line services working out of an existing project providing counseling and referral service to a specific geographic area. A wide range of formats is used worldwide, depending on the need and the organization. The South Africa AIDS Helpline is one of the most advanced call centers in the world, employing over 30 counselors and handling more than 30,000 calls a month (Stratten, 2000; Stratten and Ainslie, 2003). In Lima, Peru, the reproductive health NGO, APROPO, has a three-line hotline service connected to their ongoing programs, and it receives about 25,000 calls a year (Ainslie et al., 1999).

Formative Research Formative research is important to ensure that telephones are physically and monetarily accessible to the audience. Research should include questions about the trust and acceptance of telephone counseling for sexual health, about the preferred age and gender of the counselors, and convenient times for calling among different audiences.

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Audiences Audiences for hotlines can be the general public, such as in South Africa. Alternatively, they can target specific audiences, such as youth (e.g., “Call a Friend” hotline in the Philippines) or women (e.g., the domestic violence hotline in South Africa). Hotlines targeting specific audiences require special training and materials for hotline counselors.

Strength of the Approach Hotlines have a multitude of advantages since they combine the strength of interpersonal communication with the reach of a mass medium, the telephone. Other advantages include the following: Offering Correct Information: The advantage of hotlines is that they can provide correct information to a population in need in an anonymous and quick manner. In offering anonymity, hotlines serve as a source of information that will not embarrass, label, or judge a caller. The caller can avoid seeming ignorant, or, more importantly for youth, being seen in a clinic by friends or family. As Saunders and Helquist (1989) point out, often people need a nonjudgmental person to talk to about sensitive subjects, such as HIV/AIDS and family planning. Many times people feel better talking to an anonymous person rather than a family member or friend who many times “cannot resist offering advice, taking over the problem, or orchestrating solutions” (Saunders and Helquist, 1989). Providing a Safe Environment: Callers can feel free to express their doubts and concerns in an environment that is open and safe; they can build trust with the counselor, knowing that their call is anonymous and will not bring repercussions. Up to 70 percent of the questions or problems that callers have can be solved through the call, such as means to reduce risk of HIV/AIDS or legal information on laws pertaining to discrimination for PLHA (AIDS Hotline Conference, 1990). Making Correct R eferrals: In addition to counseling, hotline staff can make referrals for Referrals: the caller to specific services such as VCT or places where to purchase or obtain condoms. The caller receives the necessary information through a phone call at a convenient time and with less effort than actually going to a health clinic or service. R einforcing P revention Messages: Helquist and Rosenbaum (1993) discuss the fact that Prevention hotlines are able to reinforce prevention messages that have been disseminated through other channels, especially the mass media, but hotlines also reinforce messages in an interpersonal manner with person-to-person contact via the phone lines. This interpersonal communication can provide the basis for persuading people to change behaviors (Rogers, 1995). In addition, hotlines offer a way to provide the most up-to-date information available. Hotlines can also act to dispel rumors or myths being circulated—for example, reports of a new drug to cure HIV/AIDS.

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Providing a T racking System: Hotline tracking systems can show trends in the way people Tracking are thinking, misconceptions people have, or preferred channels for getting information. This information lends support to the evaluation of different ongoing programs—for example, the information the caller supplies on where he or she heard about the hotline. Tracking information is also useful in developing new interventions. A high volume of calls about a certain myth or rumor might signal the need for more information on this topic.

Essential Elements Regardless of their size, hotlines have four main components, which vary in structure from hotline to hotline. Listed as follows, they are inextricably linked, and a weakness in one will adversely affect the others. Telephone T echnology: The sophistication of telephone technology varies from one country Technology: to another. In many developing countries, telecommunication is a growing industry, particularly with the introduction of cellular and satellite phones. The type of telephone system that the program sets up will depend on the size of the hotline. Human R esources: Hotlines are about people and service. The people who manage and proResources: vide the service are key to its success. The number of hotline counselors and supervisors depends on the size of the hotline, as well as the hours of service to be provided. Training: Training hotline staff is a crucial component of any hotline. All hotline staff must be trained in the information relevant to the hotline and in telephone counseling skills. There is usually an initial training of at least 10 days and then ongoing training. Because training is time-consuming and must be done by a skilled trainer, large, national hotline projects usually have a full-time trainer or contract a training organization to conduct the training on a regular basis. R eferrals and Information R esources: Hotlines are information resources for the public Resources: and must therefore have up-to-date and accurate information on the issue for which they were established. Most hotlines develop information resources for the counselors that are easily accessible while they are taking a call. Typically these include information books or websites on the related hotline topic—for example, HIV/AIDS, suicide, or rape—and a referral directory with a list of organizations and services to which to refer callers.

Challenges and Lessons Learned Infrastructure: One of the main challenges for hotlines is the need for certain infrastructure and access to telephones. Hotlines work very well in urban areas but may not be as successful in rural areas. Telephone access will determine whether the hotline will reach the target audience. Obviously, if the access to and acceptability of telephone use is low, hotlines may not be the correct intervention, although telephone technology is growing exponentially

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with cellular phones leading the way. This increased access to technology has changed the telephone habits in many developing countries and may increase the need for hotlines (Ainslie et al., 1999). Technical Expertise: Setting up the hotline requires technical expertise. Whether a oneline hotline or a multi-line call center, it is advisable to bring in someone who can provide information on the technical aspects of telephone technology. Follow Up: Due to the anonymity of hotlines, program staff cannot follow up with a caller to verify if he or she heeded advice or adopted new behaviors. Also, there is a lack of continuity with the counselors and callers. On the one hand, the anonymity is one of the leading benefits of hotlines; on the other, it is virtually impossible to follow up with clients. However, tracking referrals may help to provide a clearer picture on the extent to which callers act on the counseling and information received. If one of the main referrals for the hotline is VCT, program staff can work with those groups providing VCT to keep track of the source of their referrals. This type of tracking can be established with other organizations to which the hotline refers callers. Telephone Counselors’ W ell-being: This factor is crucial to the sustained success of the Well-being: hotline. Telephone counselors are a critical component of a hotline and programs should address their needs. All counselors require standardized and quality training for HIV/AIDS and telephone counseling. In addition, counselors need to have mechanisms in place to help them work through difficult calls. Schedules should be developed that provide the counselors with time to do activities other than counseling. Hotlines and call centers have stressful environments and the emotional state of counselors is a priority. Counseling Standards and T raining: Hotline staff benefit from having and following a set Training: of standards. Training for hotline counselors needs to include both training on content as well as specific details on telephone counseling. Training should cover routine matters, such as who should answer the phone and whether to give one’s name, as well as more complex issues (e.g., hoax callers, children calling in for fun), including life-threatening situations. Systems need to be in place to call in a more qualified counselor if staff are not able to handle the call and to provide them with time to debrief after difficult calls. Because there can be high turnover of counselors, continuous training is usually required. Standard training curricula, as well as a standards and procedures manual, are a must. Good R eferral Systems and Up-to-date Information Referral Information: These elements are essential for hotlines. Many of the callers are seeking information on where services can be obtained, and information on referral systems must be up-to-date and complete for all the services available in a given geographical area. Sustainability: Hotlines tend to be unsustainable in their own right; they need funding and in-kind support to continue operating. This is a key issue when creating hotlines. As with many health-related services for information, they tend not to provide a revenue source. It is vitally important to partner with other organizations in order to reduce costs. Agreements with telephone companies may lower the costs of the telephone infrastructure; other

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organizations providing health services and information may be able to promote the hotlines in their own promotional materials and clinics. Many times an organization will provide the hotline with counselors to work via the phone, reducing the need to pay a full staff. Fundraising is a vital part of any hotline operation and is a continual challenge. Ongoing P romotion: It is essential to keep hotlines in public view. Hotlines, like other Promotion: communication interventions, experience highs and lows in response to the intensity of promotion. HIV/AIDS hotlines should publicize their numbers and services through their own promotions, as well as piggyback on other HIV/AIDS promotions. Hotlines should get their numbers listed in telephone guides. Also hotlines should establish contacts with journalists and other media contacts to keep them informed on HIV/AIDS, as well as to have them include the hotline number in any reports they do on HIV/AIDS. The more promotion the hotline gets, the better known it becomes.

Increasing Local Capacity Programs can build local capacity throughout the process of setting up the hotline through a hands-on approach and in-services training. Since the hotline is a long-term program, building local capacity can be incorporated with the actual development and implementation of the hotline through the ongoing activities such as: l l l l

Long-term strategic planning Fund-raising for the hotline (public and private) Counselor and supervision training (and ongoing monitoring mechanisms) Development of the hotline within ongoing programs in other organizations

Case Study: The South Africa AIDS Hotline Background: The South African Department of Health established a toll-free AIDS Helpline in 1992, which has been widely promoted as part of national and regional advertising and small media campaigns. LifeLine, is an NGO that specializes in telephone counseling, managing the service on behalf of the Department of Health. The hotline grew from a low-key project—staffed by volunteers who operated on a limited telecommunication system and took approximately 4,000 calls a month—to a highly advanced call center, which employs 30 counselors and takes over 30,000 calls per month. South Africa’s AIDS Helpline has become a model for hotlines worldwide. The expansion of this project was made possible by a bilateral agreement with JHU/CCP, USAID, and the Department of Health.

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The South African Department of Health entered into an arrangement with Telkom, the national telecommunication company, for LifeLine to utilize a system of regional loops that allowed the hotline number to be shared by 17 LifeLine regional centers. The system was decentralized, operated 24 hours a day, and used a staff of a thousand volunteer counselors. This system was functional in the early phase of the program when the call volume was low. However, with expanded promotion of the line, a number of problems emerged that compromised the quality of the service, which included among others: l l l

A high number of callers failed to connect due to the line being busy (in one area an estimated 75 percent of calls failed to get through). While volunteer counselors were trained on an ongoing basis, curricula and standards were inconsistent due to the fact that each center developed its own resources. Requests for HIV/AIDS information became more complex and it was difficult to ensure quality standardized responses. In particular, hotline counselors had difficulty in ensuring rapid and appropriate responses to myths and rumors.

Due to these shortcomings, the Department of Health decided to revamp the hotline in 1998 by adding sufficient incoming lines and an appropriate technical service to attend to the rising call rates. In addition, the new system would ensure accurate and consistent basic information about HIV/AIDS and related issues, referral information for those who needed it, and service offered in multiple languages—a must in the South African context. Audience and Strategy: LifeLine worked with telecommunication companies to assess the type of call center technology most appropriate for the hotline. The program contracted a company to develop a 24-workstation call center and a call management system to allow for holding, filtering, on-line supervision, and monitoring of calls. The system can receive calls from all over the country and track information on the geographic area where the call originates. Johannesburg was the location of choice due to its being the center of telecommunications business and close location to the Department of Health. After reviewing the call statistics of the previous years, program staff decided not to offer 24-hour service due to the low volume of calls during the night. The service would operate seven days a week from 7 a.m. to 8 p.m. The staff included management and 30 volunteer counselors. Due to the high turnover of volunteer staff, project managers decided to hire paid counselors. JHU/CCP and the Academy for Educational Development (AED) developed a standard training curriculum. The counselors went through a 10-day course that provided information on HIV/AIDS and telephone counseling techniques. They received ongoing training once a month, based on results of supervision meetings with the counselors. The counselors worked in teams of 10 and covered eight-hour shifts. After three months this schedule was revised to six-hour shifts due to burnout among the counselors. To ensure quality control, the program instituted a system of on-line supervision on a daily basis. Supervisors could listen in on calls and have calls transferred to them if counselors were struggling with these. Group supervision took place half an hour after each shift to address immediate problems and questions. Individual supervision occurred monthly. The

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hotline took extra care in monitoring the well-being of the counselors. Due to the stressful nature of the work, counselors were encouraged to discuss any problems or questions with their supervisors or other counselors, and if needed, with an outside agency. Promotion and Advertising: Promotion of the hotline during the first five years of operation was sporadic and call rates were relatively low. With the introduction of the Beyond Awareness Campaign in 1997, the Department of Health committed to promoting the hotline and including the number as part of the national red ribbon AIDS logo. This logo then appeared on all HIV/AIDS materials that the Department of Health developed. The hotline has been widely promoted on radio, in newspapers and magazines, and on outdoor media, including billboards and mobile media, as well as on television to a more limited extent. The hotline number was also included on all print media produced by the campaign. Provincial government campaigns and those of some NGOs also publicized the number. Most callers referred to the print materials as the source of the hotline number, but the radio advertising, broadcast in all 11 official South African languages, helped considerably to increase calls to the line. Call rates increased by 270 percent over the six-month period during which radio was used extensively. R esults: Given the difficulty of follow-up with callers to a hotline, it is virtually impossible to evaluate its effects on these callers. However, the sheer volume of calls to this line— 30,000 a month—attests to its importance as a source of information on HIV/AIDS throughout South Africa. Moreover, the multiple languages that counselors speak, greatly enhance the number of subgroups within the population that the hotline can potentially reach. Lessons Learned The Hotline should have Access to an Expert in T elecommunications Hardware: The Telecommunications introduction of call center technology and computer-based resources requires a technical expert on the hotline staff to avert problems and to interact with the telecommunications company about technical matters. LifeLine did not have such an expert, to which led to problems in the system and delays in establishing the new hotline. A F ull-time Human R esources Manager is Necessary for L arge Hotlines: Setting up a Full-time Resources Large payroll system and medical and other benefits is complicated and time-consuming. LifeLine initially underestimated the amount of work involved in employing 30 counselors. The human resources manager began as a part-time employee, but quickly became full-time. A F ull-time F inancial Manager is Necessary for L arge Hotlines: A substantial budget Full-time Financial Large and government and donor reporting requirements make it necessary for a large hotline to have a full-time financial manager. Prior to centralizing the call center, LifeLine’s budget was small and only required a part-time bookkeeper. The management team overlooked this position initially, but within the first six months of the call center’s operation, the need for a full-time financial manager was clear. The management team created a position and recruited a suitable candidate.

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It is Important to Ensure Counselors’ W ell-being with Shorter Shifts and Emotional Well-being Support: After three months of high-volume, emotionally laden calls, the management team realized that eight-hour shifts put too much stress on counselors. The call center manager reduced the shifts to six hours and encouraged LifeLine to explore the use of an outside agency to offer individual emotional support for counselors who requested it. The call center manager also reviewed supervisory sessions to determine how to prevent counselor burnout. A Hotline should Include a Budget for Ongoing P romotion: A significant drop in calls Promotion: occurred a few months after the establishment of the call center because the Department of Health’s HIV/AIDS communication campaign ended. Because LifeLine depended on the Department of Health to promote the hotline without budgeting for its own promotional activities, it was necessary for the call center to wait until the Department of Health implemented a new communication strategy before calls increased. Source: Stratten, 2000; Stratten and Ainslie, 2003

Using Information Communication Technologies (ICTs) Rationale Digital information communication technologies (ICTs) have clearly advanced the way individuals and groups are informed, involved, and able to collaborate in the fight against HIV/AIDS across the world. Contrary to first impressions, ICTs are not limited to the transfer of information but have the potential to be used to promote healthy behaviors, improve decision-making, increase information exchange among peers, promote self care and professional support, as well as to improve the effectiveness of health institutions (UN/ECA, 2001). Latest research data, best practice case studies, conference papers, training manuals, motivational videos, and documentary radio features are sent through e-mail, posted on websites, documented in digital databases, or compiled as training materials on CD-ROMs. The main benefits of ICTs lie in their flexibility for interaction and their ability to reach a wide range of communities and audiences (UN/ECA, 2001). While developed countries have experienced a “revolutionary” transformation in the scope and reach of information technologies and infrastructures, this digital evolution has been rather slow to materialize in developing countries (infoDev, 2001). Real disparities exist in access to and use of this information between the North and the South and between groups within countries, creating a “digital divide.” Fifteen percent of the global population, namely those living in the industrialized world, comprises 88 percent of worldwide Internet users. In comparison, South Asia has one-fifth of the global population, but only 1 percent of the Internet connections of the world (YOUandAIDS, 2002). Some progress is evident. Five

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years ago, only a handful of countries in Africa had local Internet access, whereas it is now available in every capital city. These trends are encouraging, but the differences in ICT access levels between the developing and the developed world are still very wide (Jensen, 2002). Communicators must, therefore, find innovative ways to explore and leverage these new technologies for a range of development opportunities in the HIV/AIDS field, from distance learning for health workers to bringing basic HIV/AIDS prevention information to people infected and affected by the epidemic. If carefully tailored to the situation on the ground and harnessed to its full potential, ICTs can serve as powerful tools in the prevention, treatment, and care of HIV and AIDS (infoDev, 2001). ICTs currently contribute to the prevention, treatment, and care of HIV/AIDS in the following ways: Internet-Based P ortals: These are comprehensive websites, which can include document Portals: databases, search engines, chat rooms, lists, links to resources and many more features. Internet portals such as www.aidsmap.com or www.hivinsite.uscf.edu serve as a one-stop source for HIV/AIDS information. They provide up-to-date information more quickly and comprehensively than any other medium, and they are free. In addition, they usually reach a wider audience than do journals. For users who are unable to access the Internet effectively because of low bandwidth and costly dial-up connections, many program producers offer selected information on CD-ROM and distribution by mail. Electronic Mail (e-mail): E-mail is a comparatively simple technology that has clearly changed international communication. It has great potential for development communication, since its planned or spontaneous discussion platforms may connect people and continents that have not engaged in these exchanges before. Information distribution, discussion, networking, and advocacy for HIV and AIDS are e-mail’s forte. A multitude of electronic AIDS newsletters and listserves take advantage of this technology. New software programs even allow e-mail users to receive whole websites as text-only versions on request (for an example, see www.healthnet.org, Getweb). Computer-Based T raining (CBT) or Computer Assisted Instruction (C AI): CBT or CAI Training (CAI): are interactive learning experiences in which multimedia software (web-based, CD-ROM, or DVD) on the computer provides access to the learning material. CBT and CAI programs have become popular for their use of self-paced learning in an anonymous and non-judgmental learning environment (e.g., for medical students on HIV/AIDS or for school youth on sexual decision-making and risk assessments). In addition, their use of interactive tutorials, games, and other participatory pedagogical tools have made CBT and CAI popular for engaging users in a variety of training scenarios. CBT operates either as a stand-alone or instructor-facilitated computer learning activity. The technology is also used for distance education. Advances in computer technology, software sophistication, and knowledge of proper instructional design have made it a much more viable alternative or adjunct to the traditional didactic classroom training for certain subject areas. In fact, the success of CBT in increasing knowledge and improving behaviors vis-à-vis traditional classroom settings has been fairly well-documented.

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Whereas, many training CBT have been designed for health professionals, they also serve for prevention and support with audiences ranging from students to PLHA (Knebel, 2000). The medium, however, is not limited to “training” purposes alone. Combinations of photos, videos, and voices can be effective for documentary, E–E, or advocacy purposes (e.g., a CDROM for business leaders). Satellite T eleconferences: Satellites facilitate teleconferences, both health and non-health Teleconferences: related. Their great appeal is in their ability to bring together a multitude of different people—separated by time zones and geographic boundaries—into a single, real-time forum. For instance, in May 2001, over 400 young people from five countries (Benin, Ghana, Uganda, Senegal, and the United States) participated in a teleconference on Youth and HIV/ AIDS, Women and HIV/AIDS, and Child Survival in their respective countries. The event confirmed teleconferencing as a cost-effective and technologically sound venue for facilitation of global workshops. A teleconference for a hundred people usually costs less than bringing 10 people together physically. Telemedicine: Telemedicine refers to the facilitation of health care via telephone, video/television, or other digital communication tools. Through telemedicine, urban health care centers are able to provide access to quality, state-of-the-art medical care and education to health care providers in rural and/or under-served areas. The cost of connections for long-distance telecommunication, however, poses a serious barrier. In addition, the communication infrastructure in many rural areas is unable to support the necessary bandwidth for interactive video. Despite these problems, the medium already plays a significant role in transferring diagnostic information to specialized centers (UN/ECA, 2001). A remote cousin of telemedicine, Short Message Service (SMS) technology available on cell phones, can be used for health purposes as well. For example, SMS allows a medical doctor in Cape Town to alert TB patients to take their medication. The initiative has led to a significant increase in the recovery rate of patients and could lead to savings for health care authorities (http://www.bridges.org/iicd_casestudies/compliance). Streaming Audio and Digital R adio: Radio is still one of the most important channels for Radio: reaching populations in the developing world. Many smaller stations, however, do not have the time and resources to create their own AIDS programming. The recent development of streaming audio as a way to exchange pre-produced audio program files over the Internet allows for a global exchange of AIDS programming. OneWorld Radio AIDS Network, for instance, has a searchable database exchange of audio files, which allows broadcasters and other program producers to upload and download AIDS programming audio files in any language on the web. Radio stations around the world can then rebroadcast this copyright-free material or adapt it for their own audiences. Moreover, anyone with Internet access can listen to the program online (Minyi, 2002). The development of digital radio broadcast via satellite may represent a new way to reach rural communities that are outside the range of traditional AM/FM radio stations. Satellite broadcasts are not limited by the range of radio transmitters and can reach radio stations beyond the major urban centers. For the user, however, accessing digital broadcasts requires the purchase of a completely new and comparatively expensive digital receiver. Organizations,

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such as the Worldspace Foundation, are attempting to increase distribution with a “one receiver reaches many ears” approach. The Worldspace Foundation donates a receiver to an NGO or radio station and motivates them to organize listening groups among their listening audience (Tchwenko, 2002). Although digital radio is in its infancy in the fight against HIV and AIDS, preliminary efforts seem promising. Box 6-11: Innovative W ays to Combine Community Level E–E with Mass Media: A Distance Ways Learning R adio Show in Zambia Radio The ZIHPCOMM Project developed “Our Neighborhood,” a 26-week, 30-minute radio distance learning course for neighborhood health workers, which is being broadcast on public and community radio twice weekly in Zambia. The serial is translated in five local languages and uses an entertaining format. The first 15 minutes deal with health promotion and the second half with community mobilization techniques. Print materials supplement the course. Based on the overwhelming response, ZIHPCOMM program planners added another weekly program called “Community Health with Sister Evelina” for graduates of the distance learning course. This program has a different topic each week and offers current health information including HIV and AIDS treatment and prevention, community mobilization tips, and other information that is of use to the neighborhood health workers..

Plate 6-4: Zambia distance education by radio. (Credit: Nikkie Ashley) Source: ZIHPCOMM, 2000

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Hand-held Computers: Hand-held computers (also known as PDAs) with new wireless technologies are providing development organizations with new opportunities to help health workers and researchers access needed information and data collection tools where electricity, telephone lines, and the Internet are not available. SATELLIFE, for example, has pioneered the use of PDAs as tools to conduct surveys with subsequent rapid data analysis and reporting in Ghana, Kenya, and Uganda. The use of PDAs also enables physicians and other health professionals to have access to up-to-date information (http://pda.healthnet.org/).

Formative Research There are various key research topics associated with modern ICTs, especially with regard to literacy, language, content relevance, perceived trustworthiness, affordability of technology, and accessibility. The “Bridges.org” organization developed 12 criteria that help determine whether or not people have “real access” to ICTs—that is, if people are actually able to utilize the available technology to improve their lives as opposed to simply having physical access. These criteria may be helpful in deciding whether digital tools and channels are the best way to address specific audiences: l l l l l l l l l l l

l

Physical access—Is technology available and physically accessible for the intended audience? Appropriate technology—What is the appropriate technology according to local conditions, needs, and wants? Affordability—Is technology access affordable for audiences to use? Capacity—Do people understand how to use the technology? Relevant content—Is there locally relevant content, especially in terms of language? Integration—Does the technology further burden people’s lives or does it integrate into daily routines? Socio-cultural factors—Are people limited in their use of technology based on gender, race, or other socio-cultural factors? Trust—Do people have confidence in and understand the implications of the technology they use (for instance, in terms of privacy, security, or cybercrime)? Legal and regulatory framework—How do laws and regulations affect technology use and what changes are needed to create an environment that fosters its use? Local economic environment—Is there a local economy that can and will sustain technology use? Macroeconomic environment—Is national economic policy conducive to widespread technology use (for example, in terms of transparency, deregulation, investment, and labor issues)? Political will—Is there political will to enable the integration of technology throughout society and therefore make any interventions using it more sustainable? (Adapted from Bridges.org, 2001)

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Audiences As seen above, new media challenge communicators to choose an appropriate ICT application in order to reach their intended audience. Audiences that may be especially receptive include the following: l l l l l l l l

Youth in urban areas tend to be more computer literate and less scared by new media. Women may consider mastering ICTs as a source of empowerment. PLHA can experience solidarity with other PLHA through the safety and anonymity of home computers and, to a lesser degree, telecenters. Populations at high risk of infection, such as MSM, can access information anonymously. Employees in workplaces—e-mail or local intranet systems—can easily receive and send HIV and AIDS information. Journalists can use well-researched sources for their work. Health professionals can be trained and updated by ICTs. Researchers are interested in access to the latest studies and datasets.

Strength of the Approach Generally, ICT applications are considered to (i) improve the efficiency of programs, (ii) offer cost-effective solutions once they are established, (iii) provide access to learning opportunities, (iv) represent highly innovative tools that can be designed as location and targetspecific devices, and (v) offer a high level of flexibility and interactivity. The World Wide Web (WWW), for example, is a self-paced learning environment that is available 24 hours a day, seven days a week in which users are able to interact with other like-minded individuals through chat rooms, Instant Messaging, and discussion forums. The high level of interactivity of the WWW and multimedia software is key to their increasing use (Hewitt de Alcantara, 2001; UN/ECA, 2001). Like any other medium, ICT’s weaknesses and strengths are highly dependent on the context in which they are used. Research in the US has shown that two out of three American youth have visited the WWW regularly for health purposes (Rideout, 2001), whereas a study in South Africa found that the use of the Web by youth mirrored their life priorities, such as employment and education opportunities (Scott, 2001). Similarly, only having access to ICTs will not necessarily improve the status of women in patriarchal societies. For example, access to a mobile phone may enable the male head of the household to control his wife far more effectively than in the past (Hewitt de Alcantara, 2001). ICTs have, so far, shown special strengths in the following areas: Increasing Access to P revention Information Among K ey Audiences: Internet portals Prevention Key and CBT using interactive software are particularly suited to reach key audiences with HIV/

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AIDS information. These ICTs can provide an anonymous and “safe haven” in which to access HIV/AIDS information. This feature is extremely important in environments which are not conducive to discussing sexual issues openly. By breaking down “information hierarchies” (e.g., between doctor and patient), Internet portals can empower individuals by allowing them to take control of information-gathering processes, changing initial fear and misinformation into knowledge. These features make the Internet a favorite medium among people infected and affected with HIV and AIDS. For instance, web pages such as www.iwannaknow.org or http:// www.tarsc.org/auntstella/index.html are specially designed as a source of sexual health for adolescents. Even the popular Zambian youth-for-youth newspaper “Trendsetters,” which frequently reports on HIV and AIDS and other reproductive health matters, has a digital version and now receives many letters from its readers online (http://www.youthmedia.org.zm/ trendsetters/index.htm). Several recent ICT projects have shown that the use of these technologies can complement communication campaigns designed to reach youth. For example, the World Bank’s World Links Program has been working with students and teachers in Africa since 2000 to promote HIV/AIDS education and prevention activities. Currently, over 30 schools (300 teacher and student participants) are involved in working through a variety of HIV/AIDS education modules, developing action plans for their communities, and exchanging information and discussing HIV/AIDS-related issues via the project’s e-mail forum (Bloome, 2002). To date, CBT has mostly been used for training of medical personnel. It also has the potential to present an optimal learning environment for HIV and AIDS prevention because it is able to provide (i) confidential and immediate instructional feedback tailored for individual users, (ii) opportunities for communication and refusal skills with little or no embarrassment, (iii) visual and auditory information for increased retention, and (iv) opportunities for active learning and presentations of life-like scenarios. Studies in the United States have concluded that CBT is best utilized in conjunction with other delivery systems in order to influence self-efficacy or changes associated with HIV preventive behaviors (Evans et al., 2000). Box 6-12: CT -based AIDS Education at the W orkplace CT-based Workplace Daimler Chrysler in South Africa (DCSA), in collaboration with the German Technical Cooperation (GTZ), created “info-islands,” computer touch-screen kiosks in car production areas, with multimedia content available in Afrikaans, English, Xhosa, and Zulu. DCSA also developed a website as part of their prevention activities and will soon have an interactive Wellness Information site accessible through their company intranet. These digitized communication tools are integrated with the DCSA AIDS-workplace campaign and focus on messages targeting needs identified by a KAPB assessment. Source: World Economic Forum, 2002

Creating Communities of Support for and by PLHA: PLHA use the Internet in two main ways: (i) individually for treatment information and self-care and (ii) for networking and social support (e.g., www.AIDSaction.org).

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Research on the use of this medium is not readily available outside the United States. The evidence from the US indicates that the Internet promotes empowerment, augments social support, and facilitates care for others (Reeves, 2000; Smaglik et al., 1998). A study examining the impact of a patient-centered, computer-based health information/support system (CHESS) reported quality-of-life improvements. CHESS users also reported spending less time during ambulatory care visits, making more telephone calls to providers, and experiencing fewer and shorter hospitalizations (Gustavson et al., 1996). People and organizations involved in home-based care of PLHA can also rely on the Internet to tap into the Worldwide Hospice and Palliative Care Online Network. The new network produces a free, bimonthly electronic publication that helps bridge the information gap for people in developing countries with limited resources. It provides disease information, policy, and practices as well as information on funding opportunities. Empowering AIDS and Livelihood P rograms: A variety of international organizations Programs: have developed interventions to create rural telecenters or to train disempowered populations in ICT and social issues, thereby improving access in developing countries (Bloome, 2002). In Brazil, for example, the Committee to Democratize Information Technology (CDI) created 110 completely sustainable and self-managed community-based “Computer Science and Citizenship Schools” in Brazil’s urban slums. Using recycled equipment and volunteer assistance, these schools are training over 25,000 youth each year in information technology skills that give them opportunities for education. The training also focuses on themes such as human rights, non-violence, the environment, health, and sexuality (Baggio, 1999). Mobilizing and Advocating: A multitude of e-mail discussion lists and websites have proven to be effective tools for mobilization and advocacy. “We know from previous evaluations of structured discussions that, on average, 80 percent pass on messages to people they know” (Pakenham-Walsh, 2002). As a networking tool for peer educators (www.youthhiv.org) or mobilizing platforms between organizations (e.g., http://www.globaltreatmentaccess.org), the fast and low-cost exchange of thought and action have changed responses to the epidemic. Digital tools are also used to help journalists become more effective advocates for HIV/ AIDS issues. In South Africa, a small team of journalists developed the “health-e” website, an online health news service. They pre-produce news and analysis in print and audio formats for local media and make them freely available on their website (http://www.health-e.org.za/ links.php3). The Nigeria-AIDS eForum, an Internet-based news list and discussion group for Nigeria and the West African Region (Falobi, 2001), raised awareness about the rapidly growing epidemic in the country when the disease was not even recognized as a public problem. Strengthening Capacity in HIV/AIDS P reatment among Health Prevention Treatment revention and T roject Managers in R esource-poor Environments: Health professionals Project Resource-poor Professionals and P and project managers have clearly profited from the development of ICTs. Multitudes of websites and databases provide managers and decision-makers working in developing countries and low-resource settings, information on reproductive health. PATH’s Reproductive Health Outlook (RHO) e-newsletter, for example, disseminates up-to-date summaries of research findings, program experience, and clinical guidelines related to key reproductive health, including HIV and AIDS (http://www.rho.org).

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Researchers and international NGOs frequently use the African Networks for Health Research and Development (AFRO-NETS) to exchange local and international research across Africa. This cooperation of 20 pre-existing digital networks and institutions has an electronic listserve with 1,100 direct subscribers spanning several continents. In Africa, messages are also being distributed to countrywide mailing systems through HealthNets (e.g., there are more than 300 subscribers of HealthNet Zimbabwe). AFRO-NETS is also a forum for announcing meetings, training courses, teaching materials, and other events of interest to the network. CBT has been used primarily in training for health care professionals because it is specifically suited to visually intensive, detail-oriented subject matters such as the medical or biological aspects of AIDS. This type of application, delivered through distance education systems, is on the rise. For example, CBT has trained many nurses and health workers in universal precautions. The technology also allows for simulation of procedures which would otherwise be expensive or unethical (Knebel, 2000). Telemedicine, with all its technical requirements, is used in areas as remote as the Eastern Cape of South Africa. There, doctors at the University of the Transkei are using low-cost Internet technology to send pathology, X-rays, and other diagnostic information for consultation with medical colleagues. Videoconferencing is used on a daily basis for educational and administrative purposes through broadband telephone lines (UN/ECA, 2001). Box 6-13: T ools for P rogram Managers Tools Program Special tools for Program Managers include a computer model (AVERT) to estimate effects of AIDS interventions on the reduction of HIV transmission. The program calculates how many fewer infections would be averted in a given time period following the intervention. A validation exercise showed that AVERT’s estimates were very close to the actual results of a randomized controlled study conducted in Cameroon. Source: FHI, 2003b The Synergy APDIME Toolkit is a resource to support program designers and managers in HIV/ AIDS prevention, care, and support programming in the developing world. It is described as a “window through which you can learn program outcomes, training guides and research findings.” The user is guided to tools including worksheets, budget templates, survey instruments, data, and software. Source: Synergy, 2003

Essential Elements Several elements need to be in place for ICTs to be effective. To succeed, projects need: l

Access to a variety of stable computer settings (at least e-mail, if not web-based e-mail), and a steady supply of electricity.

280 Strategic Communication in the HIV/AIDS Epidemic l l l l l l l

National policy regulations supporting e-mail and Internet access. Training of participating groups and individuals in the use of ICTs and technical connectivity. Continuous technical support and supervision for participating individuals and organizations. Promotion of a culture of information and experience sharing and of local content. Care to provide updated and correct information through ICTs. Focus on confidentiality issues in the use of ICTs. Emphasis on confidentiality issues for participating PLHA.

Challenges and Lessons Learned Barriers to HIV/AIDS prevention via the Internet are many and include: (i) uncertainty regarding efficacy of Internet interventions due to lack of evaluation data, (ii) questions about the quality of information available online, and (iii) privacy concerns among Internet users (Bull et al., 2001). Other challenges and lessons learned include: L ocalizing L anguage and Content: The dominance of materials in English makes many Language ICT applications less useful in other countries. This problem is especially apparent for regional networks, which need to agree on a common language. Participants may be unable to fully understand the information and materials or lack confidence in using a second language. In addition, the lack of local content on the WWW, for example, makes it less relevant to people’s lives outside the United States. Addressing Gender Concerns: Gender balance in access to ICTs is of critical importance for effective HIV and AIDS programming (Hafkin and Taggart, 2001). For example, there have been documented instances of male violence against women when project implementers empowered poor women entrepreneurs with ICT skills but did not think to involve men during the project conception phase. A DfID supported program is, therefore, developing a Gender Evaluation Methodology for ICT initiatives, which can be used to ensure that ICTs are used in ways that transform gender biases and roles and do not simply reproduce and replicate existing ones (APC, 2002). This also points to the importance of teaching girls and women the use of ICT, including the Internet, which, as studies have shown, increases their self-esteem (Driscoll, 2001; Gadio, 2001). Assuring Access and Sustainability: The digital divide is not new. It is, however, a complex problem that manifests itself in different ways in different settings. As mentioned earlier, access remains a major challenge, particularly to the Internet, as telephone calls in most developing countries are charged by the minute, which can result in costs that are outside the budget of NGOs and individual users. ICT solutions, which work in developed countries, cannot simply be transplanted to developing country environments. They need to be based on an understanding of local needs and conditions. Programs should pool resources and try to partner with private sector programs, donors, and other philanthropic programs in order to attain financial and technical sustainability (Pakenham-Walsh, 2002).

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Decreasing Cost: Once Internet access is guaranteed, the cost of ICT initiatives is generally low, thus making them cost-effective investments. For example, the production cost of CBT materials can be high, but CBT materials can be used repeatedly. Expanding Benefits to P eople with No Access: Information and discussion transfer using People ICTs permeates business, government, and entertainment, as well as NGOs. It is expected that HIV/AIDS information and activities will, in the end, trickle down and, thereby, improve public service communication, promote utilities, and improve the quality of local radio (Bridges, 2001). Using R adio as an Interface: Conventional radio has an innovative role to play when it Radio comes to the distribution of ICT products. For instance, a radio hub station can download digital streaming audio and copy programs for stations lacking access to equipment. In turn, these stations broadcast the programs to their own audiences (See Box 6-14). Box 6-14: R adio P resenters Browsing the Internet for Their Audiences Radio Presenters Radio can act as an affordable interface between rural people with no access and new media. UNESCO and the Sri Lanka government jointly produced a daily one-hour live Internet show. During the show, the announcer and a panel of resource people browse the Internet at the request of listeners. The panel interprets the information in the local context, presents it in vernacular language, and follows up with discussion platforms. In addition, a rural radio station is working on a database that repackages the most requested public domain information for off-line use. Source: Kenny, 2001

Making Use of Older T echnology: With all the new technology available, programs tend to Technology: overlook “older” technology, which may be just as effective and more viable in developing country settings. A study by Stewart et al. (2001) analyzed the feasibility of a telephone support group for people with hemophilia and HIV/AIDS and for their family caregivers in rural areas of the US. All of the participants reported that the telephone groups had a positive impact on meeting their support needs and also helped to decrease their feelings of isolation and loneliness. Box 6-15: T ips for Success Tips l l l

l l

Integrate ICTs strategically into wider programs, ensuring that applications are suitable for the messages and audiences. Stimulate ownership from the start. Include and engage all stakeholders (e.g., donors and private partners) and interested audience members. Pool resources, content, and constituencies and partner with other organizations to share resources and costs (e.g., develop websites together with other NGOs or link your site to third-party websites that bring together like-minded sites on a portal). Identify a “hub station” with the necessary equipment to distribute ICT products or results to less equipped network members. Foster creativity and entrepreneurship. Use ICTs to innovate ways to empower behavioral and social change.

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Increasing Local Capacity In order to strengthen capacity, ICT-based programs need to identify and train personnel in the skills needed for design, decision-making, and maintenance. So-called “eRiders,” ICT consultants skilled in nonprofit organizations’ issues can efficiently train NGOs in developing countries to gain technological expertise and create feasible solutions. International organizations such as the Open Society Institute, the Advocacy Project, and Ninth Bridge have been perfecting this idea into a model for their own in-country staff and the project work of other organizations. In addition, much more advocacy work is needed in the policy arena to facilitate regulations for access, which, in the end, can lower the cost to ICT access. Using ICT projects as a way to generate income for program participants, such as in Telecenter projects, provides additional incentive for them to participate in AIDS programs.

Case Study: Setting Up an Electronic AIDS Network in Southeast Asia Background: The prevalence and nature of the HIV epidemic vary from country to country in Southeast Asia. Whereas the rates of HIV infection among the general population are comparatively low, most countries have high prevalence rates among marginalized groups of IDUs and sex workers. In Myanmar for example, about 70 percent of IDUs are infected with HIV. Factors contributing to the spread of HIV in the region include labor migration and military conflicts that, in turn, increase drug use, transactional sex, and trafficking. To support the development of a regional network and a more coordinated approach to AIDS prevention and care in the region, UNAIDS and the World Bank coordinated the infoDev project. This project aimed to increase the use of ICTs—notably e-mail—between strategic allies working in HIV and AIDS. Strategy and Audience: The project ran from 1996 to 2000 in Cambodia, Indonesia, Laos, Malaysia, Myanmar, the Philippines, Thailand, Vietnam, and the Yunnan Province in China. The first project phase focused on establishing Internet connectivity to the offices of the national AIDS programs in each country, including a regional AIDS discussion forum, SEAAIDS, and a digital file archive. The second phase intended to expand the network and strengthen the regional networks involved in HIV and AIDS work. The objectives of the second phase involved information exchange and network building, including: (i) Dissemination of information related to HIV/AIDS within a country. (ii) Interactive dialogue on HIV/AIDS between organizations and individuals within a country.

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(iii) Interactive dialogues on HIV/AIDS between organizations and individuals in the region. (iv) General development of the use of ICTs in the health sector. UNAIDS selected participating organizations for the new networks based on an assessment and a consultation exercise in each country. The goal was to support up to 40 organizations in each country. Depending on their availability, project personnel selected either a commercial company or an information officer employed by their country office to provide the necessary initial training and continuous technical support. Whereas the projects were responsible for providing their own hardware, infoDev arranged for organizational connectivity according to the varying telecommunication environments in the country. Since staff in most participating organizations were novice users, the program provided one- to four-day training sessions. Ongoing technical support was available through e-mail, phone, and on-site visits. The technical support company or respective information officer established a variety of e-mail lists and focused on gathering and distributing relevant HIV and AIDS information. Differing language needs in each country defined the amount of work necessary to keep the exchange going. The technical support consultants or officers also tried to affect workplace information culture by motivating staff to use e-mail and the Internet on a daily basis. Forging stakeholder authorization, support, and partnerships within countries took more than one year. Depending on the country, the consultant or information officer made contact with ministries of health and education, research and academic organizations, AIDS NGOs, PLHA, and new donors. R esults: The project finalized the second phase in five of the nine countries but extended the project duration in several countries. The initial timetable to connect approximately 40 organizations in each country turned out to be too short. At the time of project evaluation, 15 to 47 organizations in each country communicated by electronic means and posted e-mail messages to listserves. For example, 103 messages were posted to the central reproductive health forum in September 2000. The evaluation of the project found that the project met all four objectives in only a few cases. Most organizations, however, viewed the project results quite positively. E-mail use among AIDS organizations in Vietnam, for example, works quite well, although there is little locally developed material. The Philippines was the most successful in strengthening its in-country HIV/AIDS networks. The organizations continue to request information from each other, exchange information on their programs through mailing lists, and incorporate e-mail into their work process. Regional communication between organizations and individuals in the region, however, did not materialize and is considered to be a weakness of the project. Finally, the use of e-mail and Internet motivated participating organizations to learn and take advantage of other benefits of ICTs. Some organizations developed their own web pages and chat rooms. Country projects were also eager to assure ongoing access to ICTs after the program ended. Some of the organizations participating in the Philippines and Thailand, for example, expanded and secured their own funding.

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Lessons Learned l l l

l l

E-mail and Internet are new media and people need time to familiarize themselves with them and integrate their potential into thinking and planning. Levels of e-mail connectivity vary considerably from country to country and tend to be more concentrated in capitals and limited in rural areas. The length of time required for obtaining the support and sponsorship of key ministries and organizations should not be underestimated. Legislative restrictions on the use of electronic communications are still in effect in some countries and affect cost, speed, and reliability of connections. This situation has an impact on which organizations participate and how they are able to perform. The cost of establishing an e-mail and Internet connection is small in relation to the potential savings that are made in international telephone and fax charges. The role of a network moderator is crucial to the success of a regional network. The moderator must, therefore, have dedicated time available for this purpose and a broad understanding of the topic. It is also important to develop a set of moderation criteria from the outset, for example, for dealing with postings motivated by selfpromotion.

Source: infoDev, 2001; SEA-AIDS, 2001

Chapter 7

Present and F uture Challenges for Communicators Future As the fight against HIV/AIDS moves into the twenty-first century, new questions and challenges confront those in national agencies and the international community working to combat the epidemic. Although these issues reach beyond the field of strategic communication per se, communicators must play a central role in designing and implementing new programs and policies. In this chapter, we address a number of present and future challenges that communicators are facing or will soon face: comprehensive approaches to prevention, including the ABCs; addressing stigma; new findings on STIs and HIV; biology, culture, and risk; risk, behavior, and technology; and the debate over human rights and public health approaches. These issues are already influencing communication for HIV/AIDS, and communicators must be familiar with them.

Comprehensive Approaches to Prevention, Including the ABCs During the past decade, intervention work in HIV/AIDS in developing countries has moved from a primary focus on prevention to a multi-pronged approach, which includes care and support, as well as testing and treatment for STIs, and, where possible, treatment for HIV. The international community engaged in the fight against HIV/AIDS recognizes that prevention alone is not as effective as prevention combined with the other interventions. However, balanced ABC approaches—abstinence (A) or delay of sexual debut, being faithful (B) or reducing sexual partners, or consistent condom use (C)—command new interest today. As we move into the third decade of the HIV/AIDS epidemic, we have learned a great deal about the promotion of the ABCs, especially from the countries that have reduced HIV prevalence: l

Many countries are willing to launch explicit programming via the mass media and other channels related to the ABCs and other elements of prevention, care, and support. Some governments committed to combating HIV/AIDS are willing to waive previous sanctions on the discussion of sex-related products and practices on the mass media because they recognize the need to educate millions on the subject of HIV/AIDS as quickly as possible.

286 Strategic Communication in the HIV/AIDS Epidemic l

l l l

Changing social norms and individual behavior related to sexual practices is enormously challenging; many social and structural obstacles make it difficult for individuals to practice safer sex. Despite the difficulty inherent in the task, well-designed programs have achieved measurable results among different audiences on “A,” “B,” and/or “C.” Programs can be designed to promote “A,” “B,” or “C” alone, or in various combinations, depending on the audiences involved. Even the most effective communication programs influence behavior relatively slowly. We must take a long-term perspective and sustain programs for as long as required, but make adjustments based on monitoring and evaluation results.

A comprehensive approach to prevention heads our list of challenges precisely because this best line of defense requires great political/cultural savvy to implement. Although the challenge differs somewhat according to the country setting, the international HIV/AIDS community must address the following questions: How can W elated to the AB Cs? Wee Accelerate Behavior Change R Related ABCs? Critics claim that except for a few countries, we have failed to produce dramatic changes in sexual behavior. Supporters claim that gradual, consistent, measurable change is better than no change at all. This book has argued that the systematic and strategic use of communication will increase the adoption of safer sex practices, assuming that programmers will attend to the challenges and adhere to the lessons learned. How can a Given P rogram P romote the Inherently Program Promote Conflicting Messages of ““A A” and “C ” for Adolescents? “C” The lessons learned and documented earlier in this book demonstrate that it is possible for communicators to develop approaches, which skillfully combine the ABCs into a single, comprehensive program. Yet the ABCs unquestionably send a mixed message to adolescents. For example, when young people receive a message on delay or abstinence on television one minute, followed by a sexually explicit condom promotion ad appealing to “hip” youth a few minutes later, which advice do they follow? Many have criticized the Love Life program in South Africa for being so embedded in popular youth culture and using jargon and concepts so unclear to both youth and adults, that the audience may fail to see any connection with safer sex behavior and the realities of PLHA (Epstein, 2003). However, evidence suggests that when we communicate clearly, youth are able to connect with those messages that resonate with their own values and needs. In Zambia, a unified media campaign that promoted both abstinence and condom use as “hip” or trendy, yielded increased practice of both behaviors among the adolescent audience (Underwood et al., 2001). Through exposure to well-designed mass media programs, peer education, counseling, and life skills training, young people can make their own decisions about who they are and what they stand for. Relations with like-minded peers through churches, youth associations and clubs, and sympathetic, adult mentors, including parents whenever possible, provide

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the greatest protective factors for young people. The involvement of young people in PLHA care and support programs is also an effective prevention strategy, since it brings the issue of their future survival to them in the clearest possible way, making the adoption of ABC highly compelling. How can W Wee Encourage Countries and Governments R esistant to Comprehensive Approaches, Including the AB Cs? ABCs? Countries have embraced comprehensive prevention programs at vastly differing rates. Not surprisingly, the countries most successful in reducing HIV rates have been those who adopted a comprehensive approach, including wide-scale, open communication on the ABCs, tied to services, as well as care and support. Many others initially held back for fear of creating panic or damaging tourism. Yet most countries with rising prevalence rates have gradually become more open to increased public dialogue on HIV/AIDS and promotion of ABCs, including explicit messages about condoms. Nevertheless, some governments and religious bodies remain strongly resistant. They may argue that open condom promotion violates the socio-cultural norms of the society. Others argue that male sexual behavior is so deeply ingrained that such communication programs would be futile. Can R eligious Organizations Increase the Religious R each and Effectiveness of AB Cs P romotion? ABCs Promotion? Religious organizations have been involved in care and support for PLHA since the epidemic began (Sometimes these bodies are called faith-based organizations or “FBOs”; however, this term is sometimes understood to include only those that adhere to fundamental tenets of faith and excludes some religions such as Buddhism, Hinduism, or even Universal Unitarianism in North America, which espouse a much more complex theological or philosophical framework). In Uganda, as we have seen earlier in this book, both Christian and Muslim bodies have been actively involved in promoting A and B and have remained non-judgmental or silent about condoms. In other countries, religious groups have openly attacked approaches involving condoms. However, today, many have come to realize that silence or attack are no longer options. This reality is becoming especially evident in the Christian Church worldwide: Today, Christians are dying, clergy are dying, Church leaders are dying. AIDS is not just happening “out there” and to “other people.” At every level, the Church itself is living with and affected by HIV; Anglicans, Roman Catholics, Lutherans, Presbyterians, Methodists, the Salvation Army, the various ecumenical bodies, the united churches of North India, Thailand, and elsewhere—they all issued statements acknowledging past failure and committing themselves to change. HIV/AIDS, they say, is nothing like the world has known; for this epidemic, the old ways just won’t work (Paterson, 2002). Religious organizations have tremendous influence over the lives of millions of followers around the world. Churches, mosques, and temples have a position of leadership in many communities, and their vast religious networks are globally connected. Their involvement in

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the HIV/AIDS response adds to the moral, ethical, and spiritual dimension called for in the UNAIDS change framework (UNAIDS, 1999a) and can wield enormous power for positive change. Moreover, they are uniquely positioned to increase tolerance and compassion. Despite their potential effectiveness in promoting at least the A and B of the ABCs, the involvement of religious bodies poses a curious dilemma for the scientific community. First, some FBOs have done a lot of harm to prevention efforts by declaring AIDS a disease of sinners such as gays, those who commit adultery, or those who frequent “prostitutes,” thereby increasing stigmatization. Second, we have relatively little hard data to document the effectiveness of their efforts to combat HIV/AIDS. Uganda is often cited as a case in point, but even in this country the specific contribution of religious groups is hard to dissaggregate from other community-based and national responses since they tend not to document their work scientifically. Support in monitoring and evaluation forms a clear capacity-building need for the future in work with religious organizations. Third, despite the empirical evidence (discussed in Chapter 3) to support a balanced approach to the prevention ABCs, the renewed emphasis on abstinence and faithfulness is often misinterpreted as pandering to the “right wing”. Skeptics may conclude that encouraging greater involvement of religious groups is simply a disguise for promoting a conservative religious and/or political agenda. However, the public health community should not be deterred from partnering with religious bodies by such arguments, but instead should work to document evidence of their present contribution. Religion has shaped and continues to influence culture and social organization. Social scientists need to understand culture and social organization in order to bring about social or behavior change. Therefore, the intersection of science and religion may prove to be a key development in the fight against HIV/AIDS during the next decade.

Addressing Stigma Stigma has emerged as an unwelcome accessory to HIV/AIDS in country after country, worldwide. PLHA have reported that the stigma of HIV/AIDS is far worse than the disease itself. In addition to its devastating effects on the morale of those living with HIV and AIDS, stigma represents one of the primary obstacles to achieving change in social norms and individual behavior. Of all the topics covered in this book, stigma may be the area in which communicators have the greatest comparative advantage to make a difference. The challenge is to identify the many and varied ways that stigma impedes prevention, testing, care, support, and treatment of HIV/AIDS in a given country and to directly address these issues through all communication interventions, be they mass media, community-based, or IPC/C. Despite widespread recognition of the problem of stigma since the beginning of the epidemic, few organizations developed specific programs to address it prior to 2000. Brown et al. (2001b) identified only 21 interventions from the published literature that explicitly attempted to decrease stigma. Of these, only two involved national-level communication interventions, and only one of the two was in a developing country.

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A recent study on stigma in Ethiopia, Tanzania, and Zambia has unearthed six major findings: l

l

l

l

l

l

People are largely unaware that their attitudes and actions are stigmatizing. Respondents spoke of the importance of not stigmatizing PLHA, but at the same time said they are “promiscuous,” “indulge in immoral behaviors,” or “deserve what they got,” and have been “punished by God for their sins.” Some languages have no word for stigma as opposed to discrimination; language is central to how stigma is expressed, through words used by individuals, the media, and in educational materials. For instance, in Tanzania, PLHA are often referred to as maiti inayotembea (walking corpse) and healthy looking PLHA as nyambizi (submarine). Knowledge and fear interact in unexpected ways that allow stigma and discrimination to persist. People maintain both correct and incorrect knowledge; for example, even when people know how HIV is transmitted, they still fear casual contact. People who do not understand the difference between HIV and AIDS equate an HIV-positive test result with imminent death and they may shun HIV-positive people for this reason. Sex, morality, shame, and blame are closely related to HIV-related stigma. HIV is usually associated with identified “high-risk” groups: sexually-active young girls, merchants, truckers, sex workers, bar ladies. These groups have often been seen to have brought shame to their families and communities. Ideally, HIV-positive individuals should feel able to disclose their status, but current attitudes toward HIV/AIDS make it difficult to do so in these countries. Rather, people often try to infer HIV status through changes in behavior, symptoms, and weight loss. Widespread care and support for PLHA coexists with stigma and discrimination. Love and care coexist with blaming, scolding, or believing PLHA are worthless. (Adapted from ICRW, 2002)

Strategic communication programs represent one of the potentially most effective means of addressing these issues to reduce stigma in the mid- to long-term. In recent years, communicators have taken some new actions that were not included in the review by Brown et al. (2001b). UNAIDS made stigma the theme of its communication program in 2002, with a series of posters that showed well-known celebrities alongside PLHA. In South Africa, Sesame Workshop and its partners have created an HIV-positive muppet by the name of Kami for inclusion in their cast of children’s TV characters, based on careful research of the topic and the audience. Kami’s positive attitude, likable personality, and openness to discussing HIV/AIDS make her a role model for young viewers throughout South Africa. On Ghanaian radio and television, traditional religious leaders ask their followers to show compassion for PLHA, and they and their congregations physically embrace PLHA in TV spots that are seen nationally on a daily basis. The mass media have the potential to reach millions with messages that put a human face on HIV/AIDS and destroy the “us and them” mentality that is so common. Other channels

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of communication can also carry messages to combat stigma and facilitate self-assessment by groups and institutions on their role in contributing to stigma. Because of the effectiveness of IPC among individuals who know and trust each other, community mobilization efforts can also be used to combat stigma at the local level by dispelling myths and breaking the silence that enshrouds HIV/AIDS in many societies. As noted above, religious leaders are becoming increasingly aware of their role in mitigating the suffering of PLHA, while sending messages of compassion and prevention to their congregations. Service providers play a pivotal role in communicating with members of the general public on STI prevention, VCT, and related topics. As community members, they are subject to the prevailing beliefs and attitudes of the cultures in which they live. Yet, as described in detail in Chapter 5, appropriate interventions can contribute to changing the attitudes they communicate to clients and their families on the subject of HIV/AIDS.

New Findings on STIs and HIV Evidence from a number of developing country settings suggests that control of STIs, especially bacterial infections and genital ulcer diseases (GUD), can have a significant impact on HIV transmission. Moreover, interventions are thought to be most cost-effective when they target vulnerable populations who account for a disproportionate share of STI transmission, such as sex workers, their clients and regular partners. It is believed that STI diagnosis and control, including clinical or presumptive treatment, as well as correct and consistent condom use, have demonstrated great cost-effectiveness in rapidly curbing HIV transmission rates. The STI, Herpes Simplex Virus-2 (HSV-2), is one of the most common causes of GUD and an important co-factor in HIV-1. Recent findings from Africa (Mar Pujades et al., 2002; McFarland et al., 1999) and from India (Reynolds et al., 2003) indicate that the majority of HSV-2 infections were asymptomatic and the presence of clinically apparent and self-reported GUD does not significantly modify the risk of HIV-1 acquisition. It is proposed that HSV-2 may be interacting with HIV-1 at the cellular level. Laboratory studies have shown the strong possibility that the presence of HSV-2 lowers the strength of the immune response to HIV-1 (Moriuchi et al., 2000). Reynolds et al. (2003) suggest that the presence of HSV-2 may account for the inconsistent results sometimes achieved by tackling STIs for control HIV transmission. Although further research is needed, these findings may have significant implications for STI/HIV control programs and for communicators working within them. A good deal of strategic thinking is required in determining the right interventions. The findings suggest that the design of interventions to prevent and treat STIs as a way to address HIV may be a more complex undertaking than previously thought. If people have HSV-2 but none of the symptoms usually associated with STIs, the disease is even less likely to be detected, reported and dealt with. If HSV-2 is detected in a FSW’s or married woman’s blood, it is difficult to communicate the fact that she has an invisible STI that is making her more vulnerable to

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another invisible STI which is a killer disease. The discussion may be somewhat “metaphysical.” Additionally, it does not solve her problem that her regular partner or husband is most likely responsible for her predicament. Since she has no symptoms it may be difficult to convince her and her partner that unprotected sex should be avoided. At any rate, as discussed previously, condoms are seldom used in regular sexual partnerships. Communicators should be aware of such evolving issues and work with medical specialists, researchers and other program personnel to determine the best approaches to dealing with them in communicating with clients and the public at large.

Biology, Culture, and Risk Although the field is still relatively understudied, scientists continue to explore culturally rooted biological risk factors that affect the transmission of the HIV virus. Presumably, a better understanding of these factors will translate into interventions designed to address them. In this section we review several of these biological factors that merit further study. Because they relate to sexual practices and reproductive organs, any further interventions based on these factors promise to be as controversial, if not more so than the prevention ABCs. Moreover, these practices are deeply ingrained in those societies practicing them, such that interventions to change them directly affront cultural values. Four biological factors that are intricately related to cultural beliefs have important implications for HIV transmission: female genital cutting (FGC), “dry sex” risky sexual practices, and male circumcision.

Female Genital Cutting As discussed in Chapter 4, it has long been held that women are biologically more susceptible to HIV infection than are men. The adolescent girl’s vagina is particularly at risk due to its immature tissue that can be more easily torn and penetrated by HIV. Female genital cutting (FGC) is a traditional practice still common in a few parts of sub-Saharan Africa that constitutes an even greater threat of HIV infection for girls and women (Morison et al., 2001). It is performed in various ways and degrees, either in infancy or as an adolescent’s rite of passage to womanhood. This practice leaves scar tissue that easily tears open in sexual intercourse in later years. Women’s groups and reproductive health organizations are working actively to create awareness of the detrimental consequences of this practice and to advocate for its eradication. FGC rarely emerges in discussions of HIV/AIDS, possibly because HIV/ AIDS organizations consider it beyond their sphere of manageable interest. Moreover, Africans often resent the intrusion of foreigners with regard to this culturally sensitive topic. However, well-researched and culturally grounded communication tools are available, and communitybased interventions have shown how it is possible to gradually persuade people to keep parts of the cultural practice but to stop the cutting (UNICEF/MML, 2003).

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“Dry” Sex The practice of dry sex, popular in some countries in sub-Saharan Africa, involves the insertion of certain substances—such as herbs, absorbents, and chemicals—into the vagina to make it drier and tighter, thereby raising its temperature during sex (Civic and Wilson, 1996; Kun, 1998) and increasing sexual pleasure for both men and women (Runganga et al., 1992). However, such practices are likely to increase HIV transmission through genital lesions and ulcerations and trauma and abrasions to the vagina and penis (Civic and Wilson, 1996; Kun, 1998). Furthermore, those who prefer dry sex practices are also unlikely to use condoms since these negate the perceived extra pleasure. Besides, even if they did use condoms, the substances inserted in the vagina could damage them during intercourse.

Risky Sexual Practices Anal sex is a practice long-associated with gay and bisexual men. However, it is now recognized that in a variety of cultures, some males have anal sex with their female partners on the assumption that this practice prevents pregnancy (true) as well as HIV transmission (false). In fact, it is as risky or even more risky than vaginal sex. Likewise, couples may have penis-tomouth oral sex on the assumption that it is “safe,” when in fact studies have demonstrated that this practice does carry some risk, albeit lower than anal or vaginal sex. A third risky sexual practice is “dipping,” or early unprotected penetration among MSM, as well as heterosexual couples, before using a condom. Many mistakenly believe that this practice is safe. Due to cultural sensitivities on the topic of sexual practices, rarely is such information incorporated into communication programs for HIV/AIDS prevention. Moreover, program planners tend to assume that male-to-female vaginal sex is the predominant practice in a given society. There is a great need for more in-depth research on these matters. As more information emerges on such subjects, communicators will need to find sensitive ways to incorporate it into their prevention messages. HIV is, after all, an STI, and HIV/AIDS prevention NGOs and reproductive health advocates in Europe continue to stress how important it is to accept and address sexual issues openly in prevention work to empower people to make responsible choices (Berne and Huberman, 1999).

Male Circumcision Male circumcision has stirred considerable debate as a possible protective factor against HIV transmission. Evidence continues to mount that men who are not circumcised have at least a 50 percent greater risk of contracting HIV than circumcised men (Halperin and Bailey, 1999; USAID, 2002d; Weiss and Quigley, 2000). It has long been noted that male circumcision is not widely practiced in the high prevalence “AIDS belt of Africa” extending

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from Uganda and western Kenya through the populations around the Great Lakes of Africa and into southern Africa. Although the scientific community initially scoffed at the association, researchers have found a striking correlation between high HIV/AIDS prevalence and low rates of male circumcision. Recently, Patterson et al. (2002) demonstrated from their laboratory studies that the tissue on the underside of the male foreskin is highly susceptible to HIV penetration, even more so than female cervical mucosal tissue. The same correlation between male circumcision and HIV prevalence appears to hold for two countries in Asia—India and Bangladesh—that have similar patterns of risk behavior but very different outcomes in terms of HIV prevalence. In India, where the male population is 90 percent uncircumcised, HIV prevalence exceeds 1 percent in the sexually active population in certain states such as Maharashtra, and the prevalence has risen to as high as 60 percent in female sex workers in Mumbai. In Bangladesh, where 90 percent of males are circumcised, HIV in the general population is so low that it is not measurable, in spite of the fact that the first cases of HIV and AIDS in Bangladesh were discovered in the early 1990s, approximately the same time as in India. The overall HIV prevalence rate in female sex workers in eight sites throughout Bangladesh remains around 0.5 percent, despite the high volume of clients (up to 44 per week) and relatively infrequent use of condoms (MOHFW, 2001). Although other as-yet-undiscovered factors may be at work, the influence of male circumcision deserves further study in this regional context. However, the cultural issues involved in Hindu (non-circumcised) and Muslim (circumcised) identities may make it too difficult to consider circumcision as an intervention in the foreseeable future. Furthermore, observational studies showing a correlation between male circumcision and HIV prevalence do not constitute proof that increased male circumcision would be an effective intervention for reducing HIV prevalence. Rather, clinical trials are needed to determine if the relationship holds in a prospective manner. At present, several research groups are conducting randomized field trials in western Kenya, western Uganda, and South Africa (USAID, 2002d) within usually uncircumcised ethnic groups to test the effectiveness of circumcision as an HIV prevention intervention (note: this research involves adult men who voluntarily seek out the procedure). If these clinical trials demonstrate that circumcision is protective against the transmission of HIV, future prevention programs could offer voluntary male circumcision as part of the menu of services. However, it is premature to contemplate this result and additional research is needed before embarking on this new line of prevention. Moreover, programmers will need to weigh the benefits of male circumcision against possible negative consequences of promoting it. For instance, unsafe practices may be reinforced, such as the tradition of circumcising groups of adolescent boys in rural Africa using the same, non-sterilized cutting instrument for all. Additionally, circumcised men may feel they have a “natural condom” and fail to practice safer sex. In fact, this kind of shift in the perception of risk should be of great concern to communication professionals, not only in the introduction of practices such as safe circumcision, but in almost any intervention introduced for HIV/AIDS prevention, care, treatment, and support.

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Risk, Behavior, and Technology HIV is invisible at the time of transmission and usually for many years afterwards, in stark contrast to many other diseases and health threats. Consequently, the general public must take on faith, messages concerning risks from scientists and programmers (Richens et al., 2003). People sometimes find it difficult to believe that an invisible agent transported by food or water will cause severe diarrhea in one or two days, but the near immediate experience of an acute attack is powerful reinforcement for behavior change. When the invisible HIV threatens a gradual decline in health that may begin in four or five years, people with little notion of science often look at educators in disbelief. Truckers, miners, and soldiers who face great risk on the job each day may laugh it off, and adolescents, who have not yet developed a full perception of risk, may simply conclude that the message does not relate to them. Such lack of risk perception is one of the long-standing puzzles and challenges that communicators face in the HIV/AIDS epidemic. However, new challenges have emerged in relation to risk behavior in response to the very technologies used in interventions.

Risk Compensation Richens et al. (2003) metaphorically explain the concept of “risk compensation.” They state the “extent to which seat belts reduce your feeling of vulnerability will be matched by the extent to which you lower your guard when you put on your seatbelt.” These authors state that in HIV/AIDS prevention, a number of strategies being used or investigated for prevention, care, and treatment—such as condom promotion, STI treatment, VCT, ART, vaginal microbicides, and HIV and STI vaccines—may have the effect of reducing the feeling of vulnerability, making it appear safer to maintain serial or concurrent sexual relationships. In fact, these authors claim that condom use may be linked to increases in other risk factors (choice of partner, amount of contact, type of sex), which offset the advantages brought by condom use. Indeed, this has always been the concern of more conservative groups who call for an abstinence-only approach and believe that promotion of condoms increases promiscuity. However, the evidence cited by the authors for the claim that using condoms may reduce one’s perception of risk is far from conclusive. For example, in Thailand, males who visited brothels and reported 100 percent condom use had a threefold higher rate of HIV seroconversion compared to those who did not visit brothels (Celentano et al., 1996). As has been discussed earlier in this book, condoms are now regarded as about 90 percent effective for HIV prevention (Hearst and Chen, 2003). It would make sense, then, that those who visit brothels are still putting themselves at risk, even more so if they are frequent visitors. Second, self-reported behavior on condom use cannot be entirely reliable, even within Thailand’s 100 percent condom program. Little data exist on the effects of the wider availability of condoms on sexual behavior and much more research is needed on this topic. Still, the concept of “risk compensation” should make us reflect on what practice or technology we are promoting and how we are promoting it. We must prepare for the day when

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microbicides—a lubricating gel that kills HIV inside the vagina—becomes available. Some people may mistakenly conclude that microbicides are the new cure. Likewise, HIV vaccines may also have the unintended effect of reducing the perception of risk. They may be seen as a “miracle cure” rather than a prevention technology. Second, with a growing number of HIV subtypes, it is highly unlikely that a single vaccine will be effective for all. However, vaccinated people may assume that they are fully protected wherever they go and with whomever they have sex. In fact, there is already anecdotal evidence that vaccine trials may cause people to “lower their guard” in terms of risky behaviors. Unfortunately, seldom are such medical trials accompanied by in-depth behavioral research. Communicators must be extremely vigilant in the conception and execution of programs that introduce and promote such new products. The case of ART underscores this point.

ART, Risk, and Behavior More worrisome and better documented is behavior response to ARV drugs. With the dramatic drop in the price of these drugs from US $10,000–$12,000 per year to less than US $500, many developing countries are gearing up or have already begun to provide ART or HAART to sero-positive individuals. Communicators have an important role to play in educating the general public about these drugs, promoting the concept of living positively, motivating patients to take the medication regularly, and assisting them to cope with side effects and changes in drug regimes. The first behavioral challenge is the issue of compliance. The effective use of ART requires 95 percent adherence to the drug regimen (i.e., correctly taking the medication in the right amounts according to schedule 95 percent of the time). Failure to do so can cause drug resistance, which, like the disease itself, can spread through the general population. Some question the capability of the crumbling health infrastructure in many developing countries to ensure the constant supply of drugs and supervise the administration to larger numbers of clients. Others question whether infected persons will overcome the stigma attached to disclosure of HIV-positive status in seeking out such services, even if available. Although shining examples exist of high quality HIV services that routinely provide ART to a large client population such facilities are a rare exception to the rule. A second major challenge in the widespread availability of ART involves the concept of behavioral disinhibition, a lowering of risk perception due to treatment optimism. This is similar to the concept of risk compensation discussed in the previous section. With easier access to ART, individuals may recognize that HIV infection is no longer a death sentence and, as a result, some gay and bisexual men in western societies appear to be reverting to unprotected anal intercourse (Kalichman, 1998; Stall et al., 2000; Van de Ven et al., 1999; Van de Ven et al., 2000). Evidence is mounting for this phenomenon. There are, in fact, new reports of a “club mentality” that has developed around being HIV-positive, because it provides a strong group identity, certain social and health benefits, and attention. The fear is that PLHA in developing countries might respond with similar behavior disinhibition that could

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lead to greater risk behavior and increased transmission of HIV, depending on viral load at the time of sexual intercourse. According to a review by Stall et al. (2000), the rate of HIV incidence among homosexually active men did not decrease significantly during the 1990s, and a slight but worrisome increase occurred among the same group in Ontario, Canada (Calzavara et al., 2000) and San Francisco (Kellogg et al., 1999; McFarland et al., 2000). This would appear to support the hypothesis that behavior disinhibition or “treatment optimism” has had the predicted effect. However, Kippax and Race (2003) argue that the adaptive behavior of gay and bisexual men is much more complicated. As reported in Chapter 4, the gay community has been at the forefront of the fight against HIV/AIDS, even before municipal, state, or national programs were formulated. These authors cite good evidence that gay men largely ignored calls for abstinence and monogamy. Rather, they adopted particular practices that provided protection: anal or oral sex that avoids penetrative ejaculation, consistent use of condoms, or “negotiated safety” (when regular sexual partners make an agreement that they will not use condoms but will always practice safe sex in outside relationships). Furthermore, Kippax and Race cite evidence that gay and bisexual men are also attempting to use their increased knowledge of their HIV status and the effects of HAART to increase the safety of unprotected sex. For instance, evidence from Australia (Van de Ven et al., 2002) indicates that HIV-negative men in casual encounters are more likely than not to adopt the assumed, less risky insert position, while HIV-positive men are more likely to assume the receptive position, thus also avoiding ejaculation of HIV-infected semen. Sequencing unprotected sex with times of low viral load also appears to be influencing the practices of homosexually active men in the era of VCT and ART. Although the above findings do not necessarily translate easily into prevention strategies for the general population, they demonstrate adaptive behavior changes, over time, among those people who have been affected by HIV and AIDS since the 1980s. The findings also remind us that the introduction of new technologies may have unintended consequences, often making sexual behavior even more complicated. Communication programs can help or hinder the problem of behavioral disinhibition. We need in-depth research and understanding of the issues and behaviors involved to effectively design future programs.

Public Health and Human Rights As noted in the opening paragraph of Chapter 5, the UN has called for a human rights approach to the provision of an enabling environment for effective prevention, treatment, and care related to HIV/AIDS (United Nations, 1998). The concept of universal human rights that evolved in the second half of the twentieth century not only claims civil and political rights for all, but social and economic rights as well. The lack of progress in realizing these social and economic rights is manifest in malnutrition, unemployment, illiteracy, lack of basic primary health care systems, poor sanitation, and low status of women—conditions that create a favorable setting for the large-scale spread of HIV and AIDS. Many have argued

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that the solution to HIV and AIDS lies in solving these broader socio-economic problems, including structural or environmental reforms. The United Nations recognizes health as a universal human right. Garret (2000) claims that as the twenty-first century has dawned, public health systems are collapsing around the world. The dominant market model is eroding such systems, as governments “disinvest” in health in favor of balanced budgets or other requirements of international donors and lending institutions. At a time when new discoveries are being made daily in medicine, inequality in access to such technology continues to rise. Each year, more people have to dig deeper into their pockets to satisfy even basic family health care needs. Especially in developing countries, where health insurance is almost non-existent, the failure of public health systems is a matter of life or death. The well-documented spread of HIV through the sale of infected blood in China has focused renewed attention to basic public health practices. The collapse of public health could not have come at a worse time. Recently, a group of researchers (Gisselquist et al., 2002) called for a new look at the physical and epidemiological data of the spread of HIV around the world. Their examination revealed a surprisingly low rate of transmission of HIV per coital act in Africa (as low as 0.0011 compared to 0.0003 to 0.0015 in the US and Europe). They believe that the spread of HIV in sub-Saharan Africa cannot be explained by the dominant view that heterosexual behavior is responsible for 90 percent of transmission. These researchers also conclude that “studies of sexual behavior do not show as much partner change in Africa as modelers have assumed, nor do they show differences in heterosexual behavior between Africa and Europe that could explain major differences in epidemic growth.” These researchers go on to document many studies showing HIV transmission in young women without sexual exposure and conclude that much more transmission occurs due to unsafe medical practices (iatrogenic transmission) than previously thought. They cite numerous incidents of HIV-positive infants being born to HIV-negative mothers, due to unsafe delivery practices. They also document a number of studies of HIV-negative women becoming HIV-positive during their pregnancies, probably due to unsafe medical procedures rather than sexual behavior. Other causes cited are unsafe abortions and unsafe STD treatments (usually injections). Simonsen et al. (1999) concluded that 50 percent of injections given in developing countries are unsafe. Other researchers have concluded that up to 160,000 HIV infections occur worldwide each year, with two-thirds in Africa, due to unsafe injections (Kane et al., 1999). Furthermore, such estimates do not take into account the rate of unsafe injections in certain groups (e.g., sex workers, STD patients, pregnant women) and specific settings of high HIV prevalence. However, the World Health Organization does not agree with the above position. It claims that globally, only around 2 percent of new HIV infections are caused by unsafe injections (WHO, 2003). Yet, at the same time, there is a growing argument that increased public health investment could dramatically help stop HIV infection. Would “fixing” public health systems alone make a big difference? Some believe it would. De Cock et al. (2002) argue that our failure to stem the tide of HIV infection in Africa is largely due to “inadequate resources, infrastructure, and commitment, and the reluctance to address HIV/AIDS as a public health and infectious disease issue.” If 30 percent of the sexually active population of the US or a European country were found to be HIV-positive, the government would view it as a public

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health emergency and take all measures possible to stop the epidemic. The authors note that throughout the world, government and private agencies take a public health approach to addressing polio, tuberculosis, and STIs, which involves targeting, testing, and follow-up investigation. But this approach was deemed inappropriate in the case of HIV/AIDS and “public health and human rights were portrayed as polarized and even conflicting” (De Cock et al., 2002). Rather, officials have taken an “exceptionalist approach” to the prevention of HIV/AIDS, which has inhibited the growth of appropriate public health services and their promotion. These authors call for a “demystification” of HIV/AIDS. They advocate placing the responsibility for avoiding HIV on every individual, while empowering communities to take charge of their own health. They call for universal “know-your-status” campaigns and programs that would emphasize the benefits of HIV testing and linkage with care and support services. They propose that testing should be a social norm rather than an anonymous act that does not even require the disclosure of HIV-positive status to the spouse of an infected person (on the basis that it would violate individual human rights). These authors go on to say, “the normalization of HIV/AIDS in a philosophical context of public health, medical ethics, and social justice is not a threat to individual human rights; rather, failure to prevent HIV transmission constitutes an infringement of human rights that hampers human and social development.” However, in recent years, HIV/AIDS program managers have increasingly insisted that HIV/AIDS is not a public health issue alone; it is a development issue that must be treated systematically by addressing the structural causes of disparity in society and the overall lack of realization of human rights. The human rights approach to HIV/AIDS (Mann, 1999) recognizes people’s vulnerability and protects them from the “victim-blame” syndrome, as well as from stigma and discrimination. Laudable as these goals have been, this approach appears to have contributed to a de-emphasis of efforts in primary prevention. In fact, this shift was more evident than ever at the 14th International AIDS Conference in Barcelona, Spain, in July 2002. Much of the program dealt with issues of treatment, care, and support of PLHA, with relatively little attention to the issue of prevention through public health approaches. Strategic communication as part of a public health response was virtually absent from the program at Barcelona, despite its vital role in addressing HIV/AIDS along the full continuum of prevention, care, treatment and support strategies and services. The United Nations holds that human rights are given to individuals at birth and are indivisible. However, at the same time, the international community recognizes that not all rights can be realized at the same time and that prioritization is inevitable. The universally declared “right to health” through increased investment in public health systems deserves higher priority in this age of HIV and AIDS. On the other hand, focusing on health alone and returning to a pure epidemiological–medical public health approach that pushes us to addressing the individual patient with symptoms—test, quarantine, and treat—does not appear to be a feasible or effective option at this stage in the history of the epidemic. The complexity of risk perception and behavior, especially as these factors interact with cultural practices and new technologies, support this fact. The debate over public health and human rights approaches will not likely disappear in the coming years and communication professionals should make their voices heard. Kippax

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and Race (2003) call for a “social public health response” in which “public” means “accessible, available to memory, and sustainable through collective activity.” As we have discussed earlier in this book, such a response appears to have been employed in the gay community of San Francisco, the villages of Uganda, and the cities of Thailand.

Conclusion The international response to HIV/AIDS becomes more complex by the day with the growing number of infected individuals, the expansion of services to address their diverse needs, and the new treatment regimens becoming available in developing countries. As the field shifts in response to international political mandates (e.g., widespread distribution of ARVs) or technological innovations (e.g., rapid testing kits), communication has a key role to play in bringing these innovations to specific audiences or the general public. In the coming decade, we will learn more about the interactions between the “A, B, and Cs” of prevention programs and the design of materials and programs must keep pace. Likewise, the interaction between HIV and other STIs, biological co-factors and cultural practices, and risk behavior and new technologies, will likely come to the forefront as science advances. Communicators must keep abreast with these issues to reformulate communication programs accordingly. The debates over the evolving evidence on iatrogenic transmission versus sexual transmission and over immediate investment in public health versus a longer-term structural and/or human rights approach are also of prime importance to communicators. The direction such debates take will affect the direction of communication programs in the next decade. Communication professionals in the field of HIV/AIDS must collaborate with public health professionals and experts of all categories to develop appropriate approaches as knowledge about the epidemic rapidly evolves. This book explains how communicators have a key role to play in supporting and promoting the delivery of services for HIV and AIDS prevention, treatment, care, and support. Strategic communication can greatly enhance the effectiveness of HIV/AIDS programs across the full continuum, though programs must invest adequate human and financial resources to obtain the desired results. This enhanced role for communication should entail greater use of advocacy for services, policy, and structural changes; social mobilization for galvanizing partners from the national to the community level; and behavior change communication. Like never before, communicators today have access to powerful channels—from satellite TV to village theater— to initiate behavior change in individuals, positive behavior development in young people, and social change in the communities in which they work. The virus is clever, fast moving, and ever changing. The time for this new attention and investment is now.

Appendix

R esources to Keep Communication Specialists Updated Addressing the AIDS epidemic becomes more complex by the day. A growing number of countries are trying to build or strengthen the health and social services infrastructure needed to provide services to those already infected and to prevent transmission among the non-infected. Even in countries with well-established programs, the advent of ART and PMTCT and the intensified programs to support HIV-positive individuals pose new challenges to those working in HIV/AIDS. The literature on intervention strategies and lessons learned continues to grow exponentially. How can professionals working in HIV/AIDS keep abreast of recent developments in this fast-evolving epidemic? This section identifies some of the key resources available to those working in HIV/AIDS, especially in the areas of communication and behavior change interventions. This audience includes a wide range of individuals: program administrators, frontline service providers, counselors, behavior change specialists, journalists, students, and others. Many of these resources will be equally useful to persons working in aspects of HIV other than communication. The resources described in this appendix address the following needs that professionals working in HIV/AIDS often experience: (1) (2) (3) (4)

Gaining/Updating knowledge Identifying prototype materials for use in intervention programs Networking Building skills through formal training programs

(1) Gaining/Updating Knowledge Information about HIV and AIDS abounds in the print literature: in books, peer-reviewed journals, newsletters, occasional reports, and other formats. Those working in the area of communication and behavior change may find the following publications particularly relevant to their needs:

Peer Reviewed Journals Peer reviewed journals offer free online content in the form of abstracts, tables of content and select full text articles, however, as a rule, one must subscribe to get complete full text access. For a list of all

Appendix 301 free online medical journals, please see the Reproductive Health Gateway at www.rhgateway.org/newsletters.html. The journals most likely to include articles on BCC for HIV/AIDS include the following: l l l l l l l l l l l l l l

l l

AIDS and Behavior: www.kluweronline.com/issn/1090-7165 AIDS Education and Prevention: www.guilford.com/cgi-bin/cartscript.cgi?page=periodicals/ jnai.htm&cart_id American Journal of Public Health: www.apha.org/journal/toc.htm British Medical Journal: www.bmj.com (access to full text articles) Health Education and Behaviour: www.sph.umich.edu/hbhe/heb Health Education Research: her.oupjournals.org Health Promotion International: heapro.oupjournals.org International Family Planning Perspectives: www.agi-usa.org/journals/ifpp_archive.html International Journal of Social Research Methodology International Journal of STDs and AIDS: www.rsmpress.co.uk/std.htm JAMA—Journal of the American Medical Association: www.jama.ama-assn.org/contents-bydate.0.shtml Journal of Health Communication: www.tandf.co.uk/journals/online/1081-0730.html New England Journal of Medicine: content.nejm.org Perspectives on Sexual and Reproductive Health: www.agi-usa.org/journals/fpp_archive.html rudolfo.ingentaselect.com/vl=42220956/cl=19/nw=1/rpsv/catchword/tandf/13645579/ contp1.htm Social Science and Medicine: www.elsevier.com/locate/socscimed The Lancet: www.thelancet.com (access to full text articles)

Newsletters and Other Regular Publications Key sources of information relevant to BCC for HIV/AIDS include: l l l l l l l l l l l l

AfroAIDS E-newsletter (NA): www.afroaidsinfo.org AIDSMAP Bulletin (biweekly): www.aidsmap.com The Drum Beat Newsletter from the Communication Initiative: www.comminit.com USAID’s HIV/AIDS E-Newsletter: www.usaid.gov/pop_health/aids/Resources/index.html Harizons Report, Operational Research Report (biannual): www.popcouncil.org/horizons/ newsletter/horizons_report.html SAfAIDS News: Southern African AIDS Information Dissemination Service: www.safaids.org. zw/safaidsweb Sexual Health Exchange from the Dutch Royal Tropical Institute (KIT), (quarterly): http:// www.kit.nl/frameset.asp?TargetURL=/default.asp Pambazuka News 98 (Social Justice in Africa by Fahmu, Kabissa, and Sangonet, weekly): www.pambazuka.org IRIN Plus News (weekly): www.irinnews.org/aidsfd.asp IAEN E-Newsletter (monthly): www.iaen.org Development Gateway (weekly alerts): www.developmentgateway.org Outlook, Path Reproductive Health Newsletter: http://www.path.org/resources/pub_outlook.htm

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E-mail Discussion Listserves Technical Areas l l l l l l l l l l l l l l l l

AIDS Workers Forum: www.aidworkers.net CDC Prevention News Update: http://lists.cdcnpin.org/mailman/listinfo/prevention-news Children Affected by AIDS (CABA): www.synergyaids.com/caba/cabaindex.asp Community Research Methodology: www.fdp.fdp.org/forums.statistics.html CORE Initiative (Faith-based and Community-based Focus): www.coreinitiative.org/core. php?sp= forum_subscribe Gender-AIDS: www.fdp.org/forums.statistics.html Home Community Care (HCCARE): www.fdp.org/forums.statics.html Health Information and Publications Network (HIPNET): www.hopkinsmedicine.org/ccp Human Rights: www.fdp.org/forums.statistics.html INT AIDS (Advocacy and Information): www.fdp.org/forums.statistics.html Media AIDS: www.fdp.org/forums.statistics.html Migration: www.fdp.org/forums.statistics.html PLHA-Net: www.fdp.org/forums.statistics.html REDLA (PLHA in Latin American and the Caribbean): www.redla.org Sex-work: www.fdp.org/forums.statistics.html Treatment Access: www.fdp.org/forums.statistics.html

Geographical Areas Asia l l l l

SEA AIDS (South East Asia, Pacific): www.hdnet.org AIDS-India: http://groups.yahoo.com/groups/AIDS-INDIA/ SAATHI (India): http://groups.yahoo.com/group/saathi Shohojogi (Bangladesh): www.fdp.org/forums.statistics.html

Africa l AF-AIDS: www.fdp.org/forums.statistics.html l Afro-Nets: www.afronets.org l Health-L (Zambia): www.fdp.org/forums.statistics.html l Kenya AIDS: http://groups.yahoo.com/group/kenya-aids/ l Nigeria AIDS E-Forum: www.nigeria-aids.org/eForum.cfm l SAFCO (West & Central Africa in French): www.fdp.org/forums.statistics.html l Health Systems Trust e-Update South Africa: www.hst.org.za Latin and Central America l INFOVIHTAL: www.gtt-vih.org (Treatment Newsletter) l PASCA: www.pasca.org/director/index.htm (Director of Central America HIV/AIDS). l Son de Tambora: www.comminit.com/ia/drum_beat.html (Communication Drumbeat in Spanish)

Occasional Reports A variety of occasional reports have been published by a variety of organizations. Here is a selection: l

UNAIDS covers a vast array of topics; for a complete listing, see www.unaids.org

Appendix 303 l

l

l

The Population Council/HORIZONS has published multiple reports to date on its operations research projects in developing countries worldwide; see www.popcouncil.org/pubasps/ publications.asp The International HIV/AIDS Alliance has published a variety of newsletters and reports about community work in HIV/AIDS and makes comprehensive toolkits available on their website: www.aidsalliance.org/ Population Reports: The December 1999 issue featured an article on Youth and HIV/AIDS: Can We Avoid Catastrophe? This 40-page report—published in English, French, Spanish, and Portuguese—took a comprehensive look at the vulnerability of youth 15–24 years old to the AIDS pandemic: how they become infected, why they are so vulnerable, strategies for addressing the epidemic, reaching out, and the consequences of inaction. See www.jhuccp.org/pr/l12edsum. shtml

In fact, the volume of information in print form has become so overwhelming that most professionals depend on a variety of daily updated Internet pages using electronic databases as part of whole Internet Gateways with a variety of services to help them identify relevant information on a specific subject. l

Web-based Gateways (including Electronic Databases): In view of the vast (and growing) amount of information on HIV/AIDS, professionals increasingly rely on computerized databases to search for information on specific topics. The table below provides a listing of websites that correspond to different informational needs. This technological advance gives health professionals worldwide access to the scientific literature, provided they have Internet access. Websites with Information R elevant to B CC and HIV/AIDS Relevant BCC What is Needed General Information

Where to Start l l l l l l l l l l l

Statistics, Incidence

l l l l l l

l

AIDS Education Global Information System (Aegis): www.aegis.org aidsmap: www.aidsmap.com Canadian HIV/AIDS Clearinghouse: www.clearinghouse.cpha.ca/ CDC Prevention/National Prevention Information Network (CDC/NPIN): www.cdcnpin.org Development Gateway: www.developmentgateway.org/node/130640/ HIV InSite: hivinsite.ucsf.edu/InSite.jsp POPLINE: db.jhuccp.org/popinform/basic.html PUBMED: www4.ncbi.nlm.nih.gov/entrez/query.fcgi UNAIDS: www.unaids.org US Centers for Disease Control: www.cdc.gov/hiv/dhap.htm USAID Development Experience Clearinghouse: www.dec.org AIDSmap: www.aidsmap.com/main/hivstatistics.asp CDC Division of HIV/AIDS Prevention: www.cdc.gov/hiv/surveillance.htm DOLPHN: Data Online for Population, Health and Nutrition: www.phnip.com/dolphn/ HIV InSite: hivinsite.ucsf.edu/InSite.jsp POPLINE: db.jhuccp.org/popinform/basic.html Statcompiler: www.measuredhs.com/data/indicators/start.cfm?action= new_table&userid=87935&user abid=98066&CFID=693613 &CFTOKEN=26544936 UNAIDS: www.unaids.org/hivaidsinfo/documents.html (Table contd.)

304 Strategic Communication in the HIV/AIDS Epidemic (Table contd.) What is Needed

Where to Start l l

News Services

l l l l l l l l

l l

Search Engines for AIDS Organizations Worldwide

l l l l

Care and T reatment Treatment

l l l l l l l l l

R eview Existing Communication Strategies/R eports/ Strategies/Reports/ Evaluations

l l l l l l l l l l l

US Census Bureau HIV/AIDS Surveillance: www.census.gov/ipc/www/ hivaidsn.html WHATUDO: www.whatudo.org (for youth) HIV InSite Daily News Watch: http://hivinsite.ucsf.edu/InSite? page=News Aegis AIDS Education Global Information System: www.aegis.org AIDScience: www.aidscience.com aidsmap: www.aidsmap.com AllAfrica.com: www.allafrica.com/aids CDC Prevention News Update: Health-e South Africa: www.health-e.org.za Integrated Regional Information Network: www.irinnews.org/AIDSFP.ASP International AIDS Society: www.ias.se Kaiser Daily HIV/AIDS Report: www.kaisernetwork.org/daily_reports/rep_ hiv.cfm OneWorld: www.aidschannel.org The Pop Reporter: www.infoforhealth.org/popreporter www.cdcnpin.org/scripts/News/NewsList.asp?strTempOrLive=Live Aidsmap: www.aidsmap.com/Search/orgsearch.asp?lang=english Global Network of People Living with HIV/AIDS: www.xs4all.nl/~gnp International Council of AIDS Service Organizations (ICASO): www.icaso.org Network of Sexwork Projects: www.nswp.org Africa Action: www.africapolicy.org/action/access.htm AIDSinfo: www.aidsinfo.nih.gov Central America HIV/AIDS Prevention Project (PASCA): www.pasca.org/ directorio/index.htm Global Treatment Access Campaign: www.globaltreatmentaccess.org HIV InSite Knowledge Base: hivinsite.ucsf.edu/InSite?page=KB HIV Positive: www.hivpositive.com/ Johns Hopkins AIDS Service: www.hopkins-aids.edu Medscape: www.medscape.com/Home/Topics/AIDS/AIDS.html POZ: www.poz.com Treatment Action Campaign South Africa: www.tac.org.za/ Advance Africa: http://www.advanceafrica.org/Compendium/ Cochraine Collaborative Review Group on HIV Infection and AIDS: hivinsite.ucsf.edu/cochrane/ ELDIS AIDS page: www.eldis.org/about/index.htm Family Health International: www.fhi.org Harvard AIDS Institute: www.hsph.harvard.edu/hai/ HIV Prevention Program Evaluation Materials Database: www2.cdc.gov/dhap1/petas/selection.asp id21 UK: www.id21.org/zinter/id21zinter.exe?a=l&w=b5 Johns Hopkins AIDS Service: www.hopkins-aids.org POPLINE: db.jhuccp.org/popinform/basic.html Population Council/Horizons: www.popcouncil.org/horizons/horizons.html PUBMED (journal articles only): www4.ncbi.nlm.nih.gov/entrez/query.fcgi (Table contd.)

Appendix 305 (Table contd.) What is Needed

Where to Start l l l l l l

R esearch/Surveys/ Indicators on HIV/AIDS

l l l l l

Share Photographs, Videos, and Art on HIV/AIDS

l l l l l l l

R eview and Share Existing Materials and T ools Tools

l l l

l l l l l

Assist in Establishing a Clearinghouse/ R esource Center to Collect and Share Materials l

l l

Southern African AIDS Information Dissemination Service (SAfAIDS): www.safaids.org.zw/safaidsweb The Communication Initiative: www.comminit.com The POLICY Project HIV/AIDS Policy Compendium Database: http://209.27.118.7/ The POLICY Project HIV/AIDS publications: www.policyproject.com/pubs/bytopic.cfm?topic=HIV The Synergy Project: www.synergyaids.com UNAIDS Best Practice Collection: www.unaids.org/bestpractice/index.html Demographic and Health Surveys (Indicator Database): www.measuredhs.com HIV/AIDS Survey Indicator Database: http://www.measuredhs.com/hivdata/start.cfm Horizon’s AIDSQuest The HIV/AIDS Survey Library: www.popcouncil.org/horizons/AIDSQuest/description.html Horizons Youth Survey Question Bank: www.popcouncil.org/youthsurvey/index.html MEASURE Evaluation: www.cpc.unc.edu/measure/topics/hiv_aids/hiv_aids.html AIDS Art: www.positiveart.org.za Artists Against AIDS Worldwide: www.aaaw.org/index.html Global Focus Films: hometown.aol.com/globalfocusfilms/index.html Photoshare: www.jhuccp.org/info/photoshare.php Red Hot org: www.redhot.org Television Trust for the Environment: www.tve.org/index.cfm The AIDS Memorial Quilt: www.aidsquilt.org/ Health Communication Materials Network: www.hcmn.org International HIV/AIDS Alliance: www.aidsalliance.org Media/Materials Clearinghouse’s Health Communication Materials Database: www.hcpartnership.org/hcp.php?sp=HCP_HCM_search&ref_ crmb=M/MC&ref_id=mmc_home OneWorld Radio AIDS Exchange: http://aidsradio.oneworld.net/index.php? Strategies for Hope: www.actionaid.org/stratshope Teaching Aides at Low Cost (TALC): www.talcuk.org/ The Synergy Project: www.synergyaids.com/resources_frame.htm UNAIDS: www.unaids.org Healthlink Worldwide Resource Center Manual: www.healthlink.org.uk/rcman/rchome.html Media/Materials Clearinghouse: http://www.hcpartnership.org/hcp.php?sp=mmc_home

R esource Centers: The term “resource center” refers to a facility that physically houses a wide variety of materials on HIV/AIDS for use by health professionals, journalists, students, and other interested parties. Resource centers are particularly useful in developing countries with limited access to the Internet. Such centers can become an important focal point for those seeking to prevent HIV/AIDS and provide HIV-related services.

306 Strategic Communication in the HIV/AIDS Epidemic One example of HIV/AIDS resource center is in Ethiopia, a country with one percent of the world’s population but nine percent of the world’s AIDS cases. Ethiopia faced a great unmet need for up-to-date information that would help to stem the epidemic in this country. CDC, Atlanta (which is responsible for the National AIDS Prevention Network or NPIN in the US) teamed with the Center for Communication Programs at the Johns Hopkins Bloomberg School of Public Health to establish a resource center in Addis Ababa. The Resource Center serves journalists, health care workers, government officials, and HIV/AIDS organizations with the latest information on HIV/AIDS, STIs, and tuberculosis. It houses a collection of print materials, provides users with Internet access to other resources, and collects examples of communication materials used in local prevention programs. In addition, the Center provides training and source materials to Ethiopian journalists to encourage accurate reporting on the epidemic. Center staff also develops high quality print and audiovisual materials, specifically for Ethiopia.

(2) Identifying Prototype Materials for Use in Intervention Programs Although each country is unique, materials from one country are often appropriate or adaptable in others. Country programs can generally benefit from having access to existing materials from neighboring countries, so they can avoid reinventing the wheel. The Media/Materials Clearinghouse (M/MC), Johns Hopkins Bloomberg School of P ublic Public rograms: This facility houses the major collection of educational Health/Center for Communication P Programs: materials on HIV/AIDS prevention and related topics. Established in 1982, the M/MC had the mandate of collecting and sharing health communication materials produced to promote reproductive health issues. The M/MC’s HIV/AIDS collection has grown from a few hundred items in 1985 to over 30,000 items as of 2002. The collection includes videos, pamphlets, posters, T-shirts, and miscellaneous paraphernalia, used for informing/educating the public as well as specialized target audiences about HIV/AIDS. Users may view much of the collection (whatever is permitted by copyright owners) on the M/MC website at: [www.hcpartnership.org/hcp.php?sp=mmc_home], which has a user-friendly search engine that attracts about 4,000 visits each day. Much of the collection is also available on CD-ROM for those who have little or no Internet access. In addition, M/MC staff has helped to set up several resource centers in a variety of developing countries.

(3) Networking Professionals in HIV/AIDS prevention around the world can take advantage of each other’s knowledge and experience by becoming part of professional networks. This process is enhanced when alumni of certain training programs maintain contact and form “working groups” in their country of residence. Electronic means of communication such as e-mail, chat rooms, bulletin boards and e-mail forums now make it easy to share and find practical information. A key example is the Communication Initiative (CI), which links health communication professionals via a virtual, e-mail and Internet-based network. Members can receive a weekly electronic magazine,

Appendix 307 “The Drum Beat,” informing them of various ongoing health communication projects. Members can customize their version of the website and e-magazine to meet their specific needs. The website offers extensive information on programs, evaluation data and methodologies, publications and reports, training opportunities, and active discussion forums across a wide spectrum of social development issues (including but not limited to HIV/AIDS). The CI also offers a classified bulletin (issued once a month), employment opportunities and a listing of consultants available for work. For more information, see www.comminit.com..

(4) Building Skills through Training Training is important for any professional. When it comes to HIV/AIDS, however, several factors make it even more critical. These include the existence of conflicting views on the most effective approaches to prevention and treatment; the changing face of the epidemic, with new skills and approaches required at every stage; the lack of a vaccine or cure which makes traditional intervention models difficult to apply; the potential for emotional conflict on the part of health workers who are stuck between their desire to treat patients and their reluctance to put themselves at risk; the numerous ethical questions involved, such as questions about the allocation of scarce resources; and the need for heightened levels of confidentiality and social support for those affected. In contrast to many other diseases, intervention strategies for HIV/AIDS are marked by a multiplicity of opinions and the lack of a single “right way of doing things.” Training may not provide direct responses and solutions to each of these areas. It can, however, equip health workers and administrators with the skills and knowledge to understand these challenges and paradoxes and to chart their own strategic course forward. Often overlooked is the need for retraining, especially for front-line workers. The science of HIV/ AIDS interventions is far from static. New technologies, methods and tools are developed and introduced on a frequent basis, often confusing and disorienting those responsible for implementing them. Political and social priorities are also subject to frequent change. Additionally, the epidemic is going through epidemic stages of change, each of which requires different responses and skills from those involved. Taken together, these constantly changing parameters can lead to high levels of burnout, staff turnover, and demotivation, especially among front-line workers who also have to deal on a daily basis with the emotional exhaustion inevitably associated with their work and managing their own lives and families in this environment. Retraining—in which health workers and administrators are periodically brought up to date, equipped with tools and made aware of new circumstances and approaches—can address these problems to some extent. Establishing such programs will, however, require a paradigm shift in prevailing attitudes toward training. Rather than seeing it as a “one-off” activity that concludes with the end of a workshop or course, training should be seen as a constant cycle—of training and retraining—that provides a regular and predictable source of motivation, knowledge and skills for those who need them the most.

The Many Faces of Training in Health Communication Since there are many aspects of health communication that can be the focus of training activities, the curricula usually reflect the needs, experience and interests of the trainees. Broadly speaking, training can concentrate on micro-level skills such as interpersonal communication and advocacy, or it can

308 Strategic Communication in the HIV/AIDS Epidemic provide a broader overview of the communication enterprise as it relates to HIV/AIDS. Training for micro-level skills can cover such areas as social and community mobilization, interpersonal communication, advocacy skills, materials development, media leveraging, entertainment–education, behavior development, gender sensitivity and human rights education, among other things. Macrolevel training is often used as a starting point, since it gives an overview of the various communicationrelated strategies and actions relevant to HIV/AIDS prevention and control. Several training modalities are available, from which planners and participants can choose according to their circumstances. These include training workshops, distance education and on-the-job training. Face-to-face W orkshops have the advantage of a unique setting in which participants are able to Workshops develop and hone intangible skills such as teamwork, efficient consultation and leadership. Distance Education may prove useful in reaching participants who, because of work commitments or physical remoteness, are not able to take part in workshops or other on-site training activities but who nevertheless want an interactive approach to learning. A variety of media types are available for this purpose including print, audio, video and various computer-based technologies; and with advancements in information technology, the number of these alternatives is likely to increase rapidly. On-the-job T raining is usually accomplished through a combination of periodic training and mentoring Training along with improvements in the quality of supervision.

HIV/AIDS Communication Training Resources In many instances, managers and professionals are aware of the need for training but may hesitate in getting started due to a lack of financial resources or information regarding training possibilities in HIV/AIDS communication. The following is an initial list of resources that could be used as a starting point. Please note, however, that new programs and courses are constantly being developed and may not have been be included.

Institutes that Offer Training Programs in this Field Academy for Educational Development: AED is an independent, nonprofit organization based in the United States working in the field of development with emphasis on health, education, youth development, and the environment. AED’s approach to training is hands-on, interactive, and costeffective programs that give participants skills they can use right away. Training areas: counseling, advocacy, training of trainers. See: www.aed.org/ AIDS Care Education and T raining (ACET): Provides health education and training services to Training schools, colleges, universities, youth clubs, community groups, homeless hostels, personal development groups, recovery groups, caring professions, churches and industry. ACET also produces Training Resources for Educators in Community, Voluntary and Statutory Sectors on HIV/AIDS, Drug Use and Misuse, and Relationships and Sexuality. Training areas: personal development, counseling and relationship training. See: www.acet.ie/ AIDS T raining, Information and Counselling Centres (A TICC): ATICC trains nurses, the youth, Training, (ATICC): parents, church leaders, traditional healers and the public. Training areas: pre-test and post-test

Appendix 309 counseling and ethical and legal issues relating to AIDS, preventive methods, safe sex and caring for the HIV-positive. Contact: 42 Havelock Road, Pietermaritzburg, ZwaZulu-Natal 3201, South Africa. British Overseas NGOs for Development (B OND): BOND is the United Kingdom’s broadest network (BOND): of voluntary organizations working in international development. BOND offers training in a wide range of areas concerned with both policy and programming aspects of development work. Training areas: advocacy and representation. See: www.bond.org.uk/lte/index.htm Center for A frican F amily Studies (C AFS): This African institution provides training, research African Family (CAFS): and technical assistance in population and reproductive health. CAFS conducts courses and provides research and consultancy services from strategically located bases in East and West Africa, with headquarters in Nairobi, Kenya, and a regional office in Lomé, Togo. Training areas: interpersonal communication and counseling, advocacy, HIV/AIDS programs in the workplace. See: www.cafs.org/ Health Behavior T raining for P roviders/Counselors: National STD/HIV P revention T raining Training Providers/Counselors: Prevention Training Center Network: There are 10 regional centers in the United States that conduct clinical services training under this network. These regional Prevention Training Centers (PTCs) coordinate with CDC in a national network to meet the continuing need for effective training in STD clinical services in support of disease prevention. Health department and medical school personnel offer help to trainers, clinicians, administrators, and researchers. Four of the PTCs will conduct behavioral intervention courses, and four will conduct partner counseling training. Training areas: health behavior training, counseling. Contact: The National STD/HIV Prevention Training Center Network. See: http://depts.washington.edu/nnptc/index.html Johns Hopkins Center for Communication P rograms (JHU/CCP): JHU/CCP is part of the DepartPrograms ment of Population and Family Health Sciences at the Johns Hopkins Bloomberg School of Public Health. It has a holistic approach to training that is highly participatory and involves “learning by doing”. Training areas: HIV/AIDS strategic communication, advocacy, interpersonal communication and counseling. See: www.jhuccp.org/training/Workshop/Workshop.htm Project Support Group: The Project Support Group (PSG) is a regional non-profit organization founded in 1986 to provide training and support to community organizations. PSG works in eight Southern African countries: Zimbabwe, Zambia, South Africa, Malawi, Botswana, Swaziland, Lesotho and Mozambique. PSG adopts a continuous, result-oriented approach to training and capacity development as opposed to one-time training. Training areas: PSG develops systems to train and support community volunteers to serve as peer educators, providing training, behavior change communication and supporting community members to care effectively for family members with HIV and orphans. Contact: Project Support Group, 4 Lorna Road, Mount Pleasant, Harare, Zimbabwe. R egional AIDS T raining Network (RA TN): The Regional AIDS Training Network (RATN) is a Training (RATN): network of training institutions in the Eastern and Southern Africa (ESA) region. The network is currently managed by a project of the University of Nairobi and the University of Manitoba, with its Secretariat based in Nairobi, Kenya. The trainees include program managers, supervisors, and trainers at district, regional, and national level. The majority of training courses, offered by partner institutions, are directed at the training of trainers, who will then apply these skills to train front-line workers. Training areas: counseling, communication skills and BCC, program management, monitoring and evaluation, training of trainers and facilitators. See: www.ratn.org/aboutus.html

310 Strategic Communication in the HIV/AIDS Epidemic Southern A frican AIDS T raining P rogramme (SA T): The Southern African AIDS Training ProAfrican Training Programme (SAT): gramme is a regional collaboration that supports community responses to HIV and AIDS through indepth partnerships in Malawi, Mozambique, Tanzania, Zambia and Zimbabwe and is involved in networking, skills exchange and lesson sharing throughout the region. Training areas: HIV prevention, HIV and AIDS care and support, counseling skills, networking and information exchange, HIVrelated advocacy on gender and human/child rights. See: www.satregional.org/ Stepping Stones: A training package on HIV/AIDS, gender issues, communication and relationship skills. Designed to enable women and men of all ages to explore their social, sexual and psychological needs, to analyze the communication blocks they face, and to practice different ways of behaving in their relationships. The workshop aims to enable individuals, their peers and their communities to change their behavior—individually and together—through the ‘stepping stones’ which the various sessions provide. See: www.talcuk.org/stratshope/ssinfo.html The AIDS Support Organisation (T ASO), Uganda: TASO Training Centre is located just outside (TASO), Kampala and offers courses for individuals and organizations. The curricula for both the counselor training and community AIDS work has evolved from TASO’s training experiences in the field of caring for People With AIDS (PWA) and their families. Training areas: counseling, HIV/AIDS counselor supervision, training of trainers. See: www.taso.co.ug/training.htm Potential Sponsorship Sources for the Above T raining P rograms: Many training events require Training Programs: participants to pay tuition or some type of training fee. Organizations that support training in HIV/ AIDS include the following. (Note: the publication of this list in no way guarantees a favorable response to specific requests in the future). Multilateral Development/R esearch Agencies Development/Research UNICEF country offices UNFPA country offices World Bank WHO country offices International Agencies W orking in the F ield of R eproductive Health and HIV/AIDS Working Field Reproductive Academy for Educational Development (AED) Catholic Relief Services Futures Group International Johns Hopkins Center for Communication Programs (JHU/CCP) John Snow International (JSI) Population Council Population Services International (PSI) Bilateral AID Agencies Canadian International Development Agency (CIDA) Danish Agency for Development Assistance (DANIDA) Department for International Development (DFID) German Technical Co-operation (GTZ) Japan International Cooperation Agency (JICA) United States Agency for International Development (USAID)

Appendix 311 National and L ocal Government Agencies Ministries of Health, Labor, Social Services, Youth, Culture, Sports, Information, Agriculture and Finance Private F oundations and Corporations Foundations Bill and Melinda Gates Foundation Ford Foundation MacArthur Foundation Packard Foundation

Bibliography AAP AAP.. (1999). “Policy Statement Media Education”, Pediatrics, 104, American Academy of Pediatrics. AED. (2001). HIV/AIDS: A Guide for Nutrition, Care and Support. Food and Nutrition Technical Assistance Project (FANTA). Washington: Academy for Educational Development. Aetna InteliHealth. (2002). Controversial Condom Ads Make Kenyan Adolescents Squirm and Adults Fume. Accessed at: www.intelihealth.com/IH/ihtIH/WSIHW000/ 8799/22002/347450.html. Aggleton, P ., Kahn, S. and P arker P., Parker arker,, R. (1999). “Interventions for Men Who Have Sex with Men”, in L. Gibney, R.J. DiClemente and S.H. Vermund (eds.). Preventing HIV in Developing Countries. Biomedial and Behavioral Approaches. New York: Plenum Publications. Agha, S. (2002). “Declines in Casual Sex in Lusaka, Zambia: 1996–1999”, AIDS 2002, 16. Ahmed, S., Lutaloa, T ., W awerb, M., Serwaddac, D., Sewankamboc, N.K., Nalugodaa, F ., Makumbia, F ., T., Wawerb, F., F., Wabwire-Mangenc, F ., Kiwanukaa, N., Kigozia, G., Kiddugavua, M. and Gray F., Gray,, R. (2001). “HIV Incidence and Sexually Transmitted Disease Prevalence Associated with Condom Use: A Population Study in Rakai, Uganda”, AIDS, 15. AIDS Analysis Asia. (1996). “Getting Drug Users Out of the Needle Habit”, Volume 2. AIDS Consortium. (1998). Final Report of the International Seminar. Access to Treatment for HIV in Developing Countries, June 5–6, 1998, UK. AIDS Hotline Conference. (1990). AIDS Hotline Conference Report, Curação, Netherlands Antilles. AIDSMARK. (2002). AIDSMARK ABC Presentation, July 2002. Washington, DC. Ainslie, R., P oppe, P argas, T Poppe, P.. and V Vargas, T.. (1999). Calling in Confidence: Telephone Hotlines as a Way to Provide Anonymous and Correct Health Information. Chicago: Presentation at the American Public Health Association Conference. Airhihenbuwa, C. and Obregon, R. (2000). “A Critical Assessment of Theories/Models Used in Health Communication for HIV/AIDS”, Journal of Health Communication, 5. Alan Guttmacher Institute. (1996). “The Entertainment Media a Sex Educator? And Other Ways Teens Learn about Sex, Contraception, STDs, and AIDS”, in Emerging Issues in Reproductive Health: A Briefing Series for Journalists. New York: Alan Guttmacher Institute, Henry J. Kaiser Family Foundation, National Press Foundation. ——— ———.. (2002). In Their Own Right: Addressing the Sexual and Reproductive Health Needs of American Men. New York: The Alan Guttmacher Institute. Amaro, H. (1995). “Love, Sex, and Power: Considering Women’s Realities in HIV Prevention”, American Psychologist, 50. Andriote, J-M. (2000). “Helping Men Make a Difference in HIV Prevention”, Impact on HIV, 2. AP AC. (2002). Report on HIV Risk Behaviour Surveillance Survey Wave 6 in Tamil Nadu, Voluntary Health APAC. Services Society (VHS), Chennai, India. AP AC/USAID. (2003). “Report on Sixth Wave: HIV Risk Behaviour Surveillance Survey in Tamil Nadu”, APAC/USAID. AIDS Prevention and Control Project, Voluntary Health Services, Chennai, India with support from USAID, New Delhi. APC. (2002). IICD Supported Project: Gender Evaluation Methodology for ICT Initiatives, Association for Progressive Communication and DFID. Accessed at: www.iconnect-online.org/base/ic_show_projects_ kar?id=89. Aranda-Naranjo, B., Gaskins, S., Bustamante, L., L opez, L. and R odriquiz, J. (2000). “La Desesperacion: Lopez, Rodriquiz, Migrant and Seasonal Farm Workers Living with HIV/AIDS”, Journal of the Association of Nurses in AIDS Care, 11.

Bibliography 313 Askew wa, N. (1998). ““Integrating STI and HIV/AIDS Services into MCH/FP Programs in East Askew,, II.. and Magg Maggwa, and Southern Africa”, unpublished paper presented at Annual Meeting of the Population Association of America, Chicago. Astana, S. and Oostvogels, R. (2001). “The Social Construction of Male ‘Homosexuality’ in India: Implications for HIV Transmission and Prevention”, Social Science and Medicine, 52. Astatke, H. and Serpell, R. (2000). “Testing the Application of a Western Scientific Theory of AIDS Risk Behavior among Adolescents in Ethiopia”, Journal of Pediatric Psychology, 25. AWMC and UNDP UNDP.. (2001). Reporting on HIV/AIDS in Africa: A Manual. The African Women’s Media Center in Partnership with United Nations Development. Accessed at: www.awmc.com/pub/p-4680/e-4681/. Baggio, R. (1999). Committee to Democratize Information Technology (Brazil), Report posted on iConnect Online—Applying Knowledge to Development. Accessed at: www.iconnect-online.org/base/ic_show_story?id= 92&cat=x on 01/19/03. Bakadi, G. (2002). Presentation. Standing and Sitting Youth. Baltimore, MD: Johns Hopkins University Center for Communication Programs. Bandura, A. (1997). Self-Efficacy: The Exercise in Control. New York: Freeman. Barket, G. and L oewenstein, I. (1996). Where the Boys Are: Promoting Greater Male Involvement in Sexualty Loewenstein, Education: Conclusions from Qualitative Research in Rio de Janeiro. Brazil: Centro de Educacao Sexual, Rio de Janeiro. Barnett, B. (2000). “Programs for Adolescents: Reproductive Health Merit Badge for Scouts”, Network, 20. Bastos, F .I. (2002). ARVs and Prevention: A Brazilian Perspective. Oswaldo Cruz Foundation, Rio de Janeiro. F.I. Presentation at the XIVth International AIDS Conference—July 7–12, 2002, Barcelona. BB CW orld Service T rust. (2002). Trust Launches HIV/AIDS Media Campaign in India. Accessed at: www.bbc.co. BBC World Trust. uk/worldservice/us/trust/020705_hivlaunch.shtml on 11/12/02. Becker J. (1997). “Letter to the Editor, A Sexual and Reproductive Health Approach in Latin America and the Caribbean”, American Journal of Public Health, 87. Benjamin, J. (2001). Women, War and HIV/AIDS: West Africa and the Great Lakes. Presented at the World Bank, International Women’s Day, March 8. For panel: Conflict, Post-Conflict and HIV/AIDS—The Gender Connections. Benjamin, J., De Buysscher Buysscher,, R. and Engel D. (2001). “HIV/AIDS Prevention and Education for Refugees: Implementing Effective Emergency Projects”. FHI/UNAIDS Best Practices in HIV/AIDS Prevention Collection. Case Study One. UNAIDS and Family Health International. Bentley Bentley,, M.E., Spratt, K. K., Shepherd, M.E., Gangakhedkar Gangakhedkar,, R.R., Thilikavathi, S., Bollinger Bollinger,, R.C. and Meherolale, S.M. (1998). “HIV Testing and Counseling among Men Attending Sexually Transmitted Disease Clinics in Pune, India: Changes in Condom Use and Sexual Behavior Over Time”, AIDS 1998, 12. Bermudez, J. and Oliveira, M.A. (2001). “Essential Medicines and AIDS Care in Brazil: Recent Lessons Learnt”, UNAIDS publication. Accessed at: www.unaids.org/publications/ documents/care/acc_access/cdrom/ Contributions%20of%20experts/Resources/Pharmaceutical%20Issues/Essential%20care%20in%20Brazil.pdf on 12/11/02. Berne, L. and Huberman, B. (1999). European Approaches to Adolescent Sexual Behavior and Responsibility. Washington, DC: Advocates for Youth. Bertrand, J.T J.T.. and Solis, M. (2000). Evaluando Proyectos de Prevención de VIH/SIDA, un Manual con Enfoque en las Organizaciones no Gubernamentales. MEASURE Evaluation Project, Chapel Hill, NC: Carolina Population Center. Besser Besser,, M.J. (2002). Mothers-to-mothers-to-be: Peer Counseling, Education and Support for Women in Pregnancy in Cape Town, South Africa. Presentation at the XIVth International AIDS Conference, July 7–12, 2002, Barcelona. Abstract. Bessinger ., Zaba, B. and Kirungi, W .L. (2002). Trends in AIDS Prevention Bessinger,, R.E., Kasheeka, E.B., Boerma, J.T J.T., W.L. Behavior in Uganda during the Nineties [abstract]. The XIVth International AIDS Conference, July 7–12, 2002, Barcelona: Knowledge and Commitment for Action. Barcelona, Spain: The Conference. Beyond A wareness Campaign. (2000a). Living Openly. HIV Positive South Africans Tell their Stories. Pretoria. Awareness ——— ———.. (2000b). The Beyond Awareness Campaign’s Living Openly Project. A Qualitative Evaluation. Accessed at: www.cadre.org.za on 02/10/2003.

314 Strategic Communication in the HIV/AIDS Epidemic Beyrer Beyrer,, C. (2001). “Shan Women and Girls and the Sex Industry in Southeast Asia: Political Causes and Human Rights Implications”, Social Science and Medicine, 53. Bhoruka. (n.d.a). Truckers Project. Accessed at: www.bhoruka.org/aids/truckers.htm on 12/16/02. ——— ———.. (n.d.b). Workplace Intervention. Accessed at: www.bhoruka.org/aids/wpi.htm on 12/16/02. Blake, M. and Babalola, S. (2002). “Impact of a Male Motivation Campaign on Family Planning, Ideation and Practice in Guinea”, Field Report Number 13. Baltimore: The Johns Hopkins Bloomberg School of Public Health Center for Communication Programs. Bloem, M. (1999). “HIV/AIDS Interventions for Street-based Sex Workers in Dhaka City: Going beyond their Sexual Organs”, Research for Sex Work, 2. Bloom, S.S., Banda, C., Songolo, G., Mulendema, S., Cunningham, A.E. and Boerma, J.T J.T.. (2000). “Looking for Change in Response to the AIDS Epidemic: Trends in AIDS Knowledge and Sexual Behavior in Zambia, 1990 through 1998”, Journal of AIDS, 25. Bloome, A. (2002). Fighting the Insidious Killer: African Teenagers Battle HIV/AIDS through ICT. Development Outreach Special Report. World Bank. Accessed at: www1.worldbank.org/devoutreach/spring02/article. asp?id=160. Bracht, N. and Kingsbury Kingsbury,, L. (1990). “Community Organization Principles in Health Promotion: A FiveStage Model”, in N. Bracht (ed.). Health Promotion at the Community Level. Newbury Park, CA. Bridges. (2001). Spanning the Digital Divide: Understanding and Tackling the Issues. South Africa: www.bridges.org. Brown, L., T rujillo, L. and MacIntyre, K. (2001a). Interventions to Reduce HIV/AIDS Stigma: What have We Trujillo, Learned? New York: Population Council. Brown, L., Macintyre, K., Rutenberg, N. and Hassig, S. (2001b). Voluntary Counseling and Testing in SubSaharan Africa: An Overview. Washington, DC: Horizons/Population Council. Brussa, L. (2002). TAMPEP Co-ordinating Centre Report. Accessed at: www.europap.net/links/tampep.htm. Bull, S.S., McF arlane, M. and King, D. (2001). “Barriers to STI/HIV Prevention on the Internet”, Health McFarlane, Education Research, 16. Busza, J.R. (1999). Challenging HIV-related Stigma and Discrimination in Southeast Asia: Past Successes and Future Priorities. Bangkok: Population Council. ——— ———.. (2001). “Promoting the Positive: Response to Stigma and Discrimination in Southeast Asia”, AIDS CARE, 13. Calderon, M.R. (1997). Gender-Sensitive Initiatives, HIV/AIDS Prevention and Control Synopsis Series. Latin America and Caribbean: Regional Office AIDSCAP/Family Health International. Calzavara, L., Burchell, A., Major emis, R., Corey ., Myers, T ., W allace, E., Millson, M. and the Major,, C., R Remis, Corey,, P P., T., Wallace, Polaris Study T eam. (2000). Increasing HIV Incidence among MSM Repeat Testers in Ontario, Canada, 1992– Team. 1998. Paper presented at the XIIth International Conference on AIDS, Durban, South Africa. Calzavara, L., Burchell, A., R emis, R.S., Major ., Corey ., Myers, T ., Millson, P Remis, Major,, C., Medved, W W., Corey,, P P., T., P.. and Wallace, E. (2002). Reconsidering Condom Use: What MSM are Saying about Delayed Application of Condoms: Results of the Polaris HIV Seroconversion Study. Presentation at the XIVth International AIDS Conference, July 7–12, 2002, Barcelona. Abstract. Campbell, C. (2000). “Selling Sex in the Time of AIDS: The Psycho-social Context of Condoms Use by Sex Workers on a Southern African Mine”, Social Science and Medicine, 50. Campbell, C. and W illiams, B. (1999). “Beyond the Biomedical and Behavioural: Towards an Integrated Williams, Approach to HIV Prevention in the Southern African Mining Industry”, Social Science and Medicine, 48. Caplan, N. and Nelson, S.D. (1973). “On Being Useful: The Nature and Consequences of Psychological Research on Social Problems”, American Psychologist, 28. Carael, M., Buvé, A. and A wusabbo-Asare, K. (1997). “The Making of HIV Epidemics: What are the Driving Awusabbo-Asare, Forces?”, AIDS, 11. Carnegie, R. (2001). “Meeting Meena”, Documentation Study on Utilization of Meena Communication Initiative. Kathmandu: UNICEF Regional Office for South Asia. Carnegie, R. and W eisen, R.B. (2000). “The Ability to Act: Strengthening People’s Life Skills”, in N. McKee, Weisen, E. Manoncourt, S.Y. Chin and R. Carnegie (eds.). Involving People, Evolving Behaviour. New York: UNICEF, Penang, Malaysia: Southbound. Carneiro-da-Cunha, C., K errigan, D., Malta, M., F ortuna, M., Strathdee, S. and Bastos, F Kerrigan, Fortuna, F.. (2002). Assessing and Improving Adherence to the Highly Active Anti-Retroviral Therapy among Socially Disadvantaged Persons

Bibliography 315 Living with HIV/AIDS in Rio de Janeiro, Brazil. Presentation at the XIVth International AIDS Conference, July 7–12, 2002, Barcelona. Abstract. Cash, K., Sanguansermsri, J., Busayawong, W W.. and Chuamanochan, P P.. (1997). “AIDS Prevention through Peer Education for Northern Thai Single Female and Male Migratory Factory Workers”, Phase II Research Report Series No. 5. ICRW. Castle, C.J. (2002). Meaningful Involvement of PLHA: Positive and Negative Effects of Involvement in Communitybased Programs. Presentation at the XIVth International AIDS Conference, July 7–12, 2002, Barcelona. Abstract. Catania, J., Stall, R. and Osmond, D. (1998). HIV Seroprevalence Rates among Men Who have Sex with Men in the Urban Men’s Health Study. American Public Health Association Conference, November 15–18, Washington, DC. CDC. (2000). Consultation on Recent Trends in STD and HIV Morbidity and Risk Behavior among MSM. Meeting Report October 30–31. Atlanta: Centers for Disease Control and Prevention. ——— ———.. (2001a). HIV Prevalence Trends in Selected Populations in the United States: Results from National Serosurveillance, 1993–1997. Center for Disease Control and Prevention 2001. Atlanta: Center for Disease Control and Prevention. ———. (2001b). Need for Sustained HIV Prevention among Men who have Sex with Men. Atlanta: Center for Disease Control and Prevention. ———. (2002). “Voluntary Counseling and Testing”, in Global AIDS Program, Technical Strategies. Atlanta: Center for Disease Control. Accessed at: www.cdc.gov/nchstp/od/gap/strategies/2_1_vct.htm. Celentano, D.D., Nelson, K.E., Suprasert, S., Eiumtrakul, S., T ulvatana, S. and K untolbutra, S. (1996). Tulvatana, Kuntolbutra, “Risk Factors for HIV-1 Seroconversion among Young Men in Northen Thailand”, Journal of American Medical Association, 275. Chen, S., Gibson, S. and F arland, W Farland, W.. (2002). High Level of Unprotected Anal Sex between HIV Serodiscordant Men Who have Sex with Men. San Fransciso. Johns Hopkins Bloomberg School of Public Health, Stop AIDS Project and Department of Public Health, San Francisco. Presentation at the XIVth International AIDS Conference, July 7–12, 2002, Barcelona, Abstract. Chimzizi, R.B.K., Hargreaves, N.J., Golombe, C., Munthali, F ., Kajawo, E. and Salaniponi, F .M. (2002). F., F.M. Improving the Quality of Voluntary Counseling and HIV Testing Services in Malawi Using the UNAIDS VCT Quality Evaluation Tools. IIIrd International Conference on HIV/AIDS, July 7–12, 2002, Barcelona. Abstracts. Chitwood, D.D., McCoy rapido, E., McCoy ., McCoy,, C.B., Inciardi, J.A., McBride, D.C., Comerford, M., T Trapido, McCoy,, H.V H.V., Page, J.B., Griffin, J. and Fletcher Fletcher,, M.A. (1990). “HIV Seropositivity of Needles from Shooting Galleries in South Florida”, American Journal of Public Health, 80. CIIR. (n.d.). “Equality between Men and Women”. Accessed at: www.ciir.org/ciir.asp?section=advocacy&page= gender on 7/12/03. Civic, D. and W ilson, D. (1996). “Dry Sex in Zimbabwe and Implications for Condom Use”, Social Science and Medicine, 42. Cleland, John. (1996). “Community Participation in Family Planning”, in Family Planning, Health and Family Well-being. New York: United Nations. Coates, D.L. (2002). Retrospective Summative Evaluation of the Community-based Options for Protection and Empowerment (COPE-Malawi) Project Phase II: A Save the Children-USA Project. August 1990 to July 2002. Connor ., Scott, G., O’Sullivan, M.J., V anDyke, R., Bey Connor,, E.M., Sperling, R.S., Gelber Gelber,, R., Kiselev Kiselev,, P P., VanDyke, Bey,, M., Shearer Shearer,, W W.. and Jacobson, R.L. (1994). “Reduction of Maternal–Infant Transmission of Human Immunodeficiency Virus Type 1 with Ziduvudine Treatment”, New England Journal of Medicine, 331. Cornu, C., Castle, C., Chabala, T ., Mwanza, D. and Quedraogo, A. (2002). The Dynamics of Self-help in T., Africa: What Makes Support Groups of PLHA Sustainable or Not. Presentation at the XIVth International AIDS Conference, July 7–12, 2002, Barcelona. Abstract. Coutsoudis, A., Pillay uhn, L. and Coovadia, H.M. (1999). “Influence of Infant-feeding Pillay,, K., Spooner Spooner,, E., K Kuhn, Patterns on Early Mother-to-child Transmission of HIV-1 in Durban, South Africa: A Prospective Cohort Study”, The Lancet, 354. C.S.O C.S.O.. (1998). Zambia Sexual Behaviour Survey with Selected Findings from the Quality of STD Services Assessment. Central Statistics Office of the Republic of Zambia and Measure Evaluation.

316 Strategic Communication in the HIV/AIDS Epidemic Dabis, F ., Newell, M.L., F ransen, L., Saba, J., Lepage, P ., Leroy ., Cartoux, M., Meda, N., Whynes, D.K., F., Fransen, P., Leroy,, V V., Peckham, C., Nduati, R., Msellati, P ., V incenzi, I.D. and van de P erre, P P., Vincenzi, Perre, P.. (2000). “Preventing Motherto-Child Transmission of HIV in Developing Countries: Recommendations for Practice”, Health Policy and Planning, 15. Dadian, M.J. (2003). “Feature: Vietnamese Construction Workers Listen to their Peers”, AIDSLink, 79. Dagron, A.G. (2001). Making Waves: Stories of Participatory Communication for Social Change. A Report to the Rockefeller Foundation. New York: Rockefeller Foundation. Accessed at: www.comminit.com/pdsMakingWaves/ sld-6413.html. Day Day,, J.H., Charalambous, S., Grant, A.D. and Churchyard, G.J. (2000). “Integrated HIV Prevention and Care: Experience from the South African Mining Industry”, AIDS Bulletin, 9. Debus, M. (1986). Excellence in Focus Group Research. Washington, DC: Academy for Educational Development. De Cock, K.M., F owler incenzi, I., Saba, J., Hoff ogers, M. Fowler owler,, M.G., Mercier Mercier,, E., de V Vincenzi, Hoff,, E., Alnwick, D.J., R Rogers, and Shaffer Shaffer,, N. (2000). “Prevention of Mother-to-Child HIV Transmission in Resource-Poor Countries”, JAMA, 283. De Cock, K.M., Mbori-Ngacha, D. and Marum, E. (2002). “Shadow of the Continent: Public Health and HIV/AIDS in Africa in the 21st Century. AIDS in Africa V”, The Lancet, 360. De Coito, T ., R alepeli, S. and Steen, R. (2000). “Forging Multisectoral Partnerships to Prevent HIV and T., Ralepeli, Other STIs in South Africa’s Mining Communities”, Impact on HIV, 2. de F ossard, E. (1996). How to Write a Radio Serial Drama for Social Development: A Script Writer’s Manual. Fossard, Baltimore: The Johns Hopkins University, Center for Communication Programs. ———. (1998). How to Design and Produce Radio Serial Drama for Social Development: A Program Manager’s Guide. Baltimore: The John Hopkins University, Center for Communication Programs. De Jong, J. (2001). A Question of Scale? The Challenge of Expanding the Impact of Non-Governmental Organizations’ HIV/AIDS Efforts in Developing Countries. Population Council. de Negri, B., Thomas, E., Ilinigumugabo, A., Muvandi, I. and Lewis, G. (1998). Empowering Communities: Participatory Techniques for Community-based Programme Development, Vol. 1: Trainer’s Manual (Participant Handbook). Nairobi: The Centre for African Family Studies (CAFS), in collaboration with the Johns Hopkins University Center for Communication Programs and the Academy for Educational Development. Department of Health. (1997). Guidelines for Developing a Workplace Policy and Programme on HIV/AIDS and STDs. South Africa: Directorate HIV/AIDS and STDs. Des Jarlais, D.C., Downing, M., V ernon, K., Riess, T .H., Mulia, N., McKnight, C. and Edlin, B.R. (2002). Vernon, T.H., Community Acceptance of Controversial HIV Prevention Programs for IDUs. Presentation at the XIVth International AIDS Conference, July 7–12, 2002, Barcelona. Abstract. de V itoria, M.A. (2002). “Model of Success. Universal Access to Treatment in Brazil. Delivering the Goods”, Vitoria, ID, 21. de W agt, A. (2002). Is There an Alternative?—Analysis of Studies on Knowledge and Perceptions of Health Workers Wagt, and Communities on HIV Transmission and Infant Feeding Options for HIV-Positive Mothers. Nairobi:UNICEF Eastern and Southern Africa. DGHS. (2000). Report on the Second National Expanded HIV Surveillance, 1999–2000. Bangladesh. ——— ———.. (2003). HIV in Bangladesh: Is Time Running Out?: Background document for the dissemination of the fourth round (2002) of the national HIV and behavioural surveillance, National AIDS/STD Programme, Directorate General of Health Services, Ministry of Health and Family Welfare, Bangladesh. Dhaliwal, M., Decho, P ., Stern, C. and Cornu, C. (2002). Involving PLHA to Improve Access to HIV-related P., Treatment. Presentation at the XIVth International AIDS Conference, July 7–12, 2002, Barcelona. Abstract. DISH II. (2000). Promoting VCT in Uganda. The “Take Control of Your Life” Campaign. ——— ———.. (2001). Centre 4 TV/Video Series. Accessed at: www.ugandadish.org/bcc/ centerpiece.shtml#tv. ——— ———.. (2002). Best Practices. Improving the Quality of Health Care Services through Monitoring of Standards and Recognition of Performance: The Yellow Star Program (summarized and updated by Cheryl Lettenmaier, JHU/CCP). Dorabjee, J. (1998). Beyond Appearances. Paper Presented at the IXth International Conference on the Reduction of Drug Related Harm—March 19, 1998, Sao Paolo, Brazil. Dream Out L oud P roductions. (2003). Controversial Film on Deliberate HIV Sero-Conversion. One of only Productions. eleven documentaries accepted to prestigious Berlin Film Festival: “The Gift” explores subculture of gay men

Bibliography 317 seeking HIV infection, January 24. Accessed at: www.aegis.com/news/pr/2003/PR030118.html on 7/13/2003. Driscoll, L. (2001). HIV/AIDS and Information and Communication Technologies. Accessed at: www.idrc.ca/ ACACIA/HIV_AIDSfinaldraft.PDF. Dukers, N.H.T ., Spaargaren, J., Geskus, R.B., Beijen, J., Coutinho, R.A. and F ennema, H.S.A. (2002). N.H.T., Fennema, HIV Incidence on the Rise among Homosexual Men in Amsterdam: Using a Novel Approach for Detecting Recent Infection. Municipal Health Services, Amsterdam. Presentation at the XIVth International AIDS Conference, July 7–12, 2002, Barcelona. Abstract. Epstein, H. (2003). The New York Review of Books, July 17, 2003. W illiams, E., Chomba, M., Chambeshi-Moyo, M. and Motsepe, J. (2002). Involving Young People in the EsuEsu-W Care of PLHA: Bridging the Gap in Community Care. Presentation at the XIVth International AIDS Conference, July 7–12, 2002, Barcelona. Abstract. Evans, A., Edmundson-Drane, E. and Harris, K. (2000). “Computer-Assisted Instruction: An Effective Instructional Method for HIV Prevention Education”, Journal of Adolescent Health, 26. Falobi, O O.. (2001). ICT for Health: Combating HIV/AIDS in Nigeria through the Nigeria AIDS eForum. Report posted on iConnect Online—Applying Knowledge to Development. Accessed at: www.iconnect-online.org/ base/ic_show_story?id=92&cat=x on 01/19/03. FHA. (2000). Wake Up Africa Evaluation. Niger, July (AED as Subcontractor for JHU/CCP on Family Health and AIDS Project). Accessed at: lnweb18.worldbank.org/sar/sa.nsf/ 6062ad876fb8c066852567d7005d648a/ 176fd35a8e92b6ee85256a9b00520bb2?OpenDocument on 12/06/02. ———. (n.d.) Les Clés-De-La-Vie (Keys for Life). Accessed at: www.jhuccp.org/africa/regional/FHA.shtml. FHI. (1997). Making Prevention Work. Global Lessons Learned from the AIDS Control and Prevention (AIDSCAP) Project 1991–97, Arlington. ———. (2000a). Qualitative Research on MSM in Maharashtra. Mumbai: Blackstone Marketing for Family Health International. ———. (2000b). The Health of Adolescent Refugees Project (HARP): Evaluation of the Pilot Project. Research Triangle Park, NC: FHI. ———. (2001). Reducing HIV in Injection Drug Users. FHI Focus Series. ———. (2002a). Behavior Change Communication (BCC) for HIV/AIDS: A Strategic Framework. Arlington, Va: Family Health International Institute for HIV/AIDS. Accessed at: www.fhi.org. ———. (2002b). Final Report for the AIDSCAP Program in Zimbabwe, October 1992 to October 1997. Washington, DC: FHI. ———. (2002c). Making Prevention Work: Global Lessons Learned from the AIDS Control and Prevention (AIDSCAP) Project 1991–1997. Washington, DC: FHI. ———. (2002d). “Peer Education at Mumias Sugar Company in Kenya”, Unpublished Report. ———. (2003a). Realizing the HIV Prevention-to-Care Continuum in Kenya. Accessed at: www.fhi.org/en/ HIVAIDS/Publications/IOH/ioh-kenya.htm on 6/22/03. ———. (2003b): AVERT: A Tool for Estimating Interventions Effects on the Reduction of HIV Transmission. Accessed at: www.fhi.org/en/HIVAIDS/Publications/manualsguidebooks/Avert.htm on 7/22/03. Figueroa, M.E., Kincaid, D.L., R ani, M. and Lewis, G. (2002). Communication for Social Change: A Model for Rani, Measuring the Process and Its Outcomes. New York: Rockerfeller Foundation Report. Fishbein, M. (2000). “The Role of Theory in HIV Prevention”, AIDS Care, 12. Fletcher Fletcher,, G. (2000). “Making an Impact on HIV/AIDS in Cambodia”, Impact on HIV, 2. FOCUS on Y oung Adults. (1997). “Using Peer Promoters in Reproductive Health Programs for Youth”, December. Young ———. (1999). Reaching Adolescents through Hotlines and Radio Call-in Programs. Washington, DC: Focus on Young Adults Project. Fonseca-Becker ., Bakadi, G., Mwebesa, G. and Sienche, C. (2003). HIV/AIDS Prevention among Youth in onseca-Becker,, F F., Upper Guinea: Impact Evaluation Report of a Behavior Change and Community Mobilization Campaign. Baltimore, MD: Johns Hopkins University Bloomberg School of Public Health Center for Communication Programs. Foreman, M. (2000). “An Ethical Guide to Reporting HIV/AIDS”, in S.T.K. Boafo and C.A. Arnaldo (eds.). Media and HIV/AIDS in East and Southern Africa: A Resource Book. UNESCO.

318 Strategic Communication in the HIV/AIDS Epidemic Fylkesnes K., Musonda, R.M., Sichone, M., Ndhlovu, Z., T embo, F Tembo, F.. and Monze, M. (2000). Declining HIV Prevalence and High Risk Behavior in Zambia: Evidence from National Surveillance and Population-based Surveys. The XIIIth International AIDS Conference, July 9–14, 2000, Durban. Abstract ThOrC720. Gadio, C.M. (2001). Exploring the Gender Impacts of World Links in Some Selected Participation African Countries. World Links. Accessed at: www.world-links.org/english/assets/gender_study_v2.pdf. Gaillard, P ., Meilis, R. and Mwanyumba. F P., F.. (2000). Consequences of Announcing HIV Seropositivity to Women in an African Setting: Lessons Learned for the Implementation of HIV Testing and Interventions to Reduce Mother-toChild HIV Transmission. Program and Abstracts of the XIIIth International AIDS Conference, July 9–14, 2000, Durban. Session MoPeD2785. ansky Galavotti, C., P appas-DeLuca, K.A. and L Lansky ansky,, A. (2001). “Modeling and Reinforcement to Combat HIV: Pappas-DeLuca, The MARCH Approach to Behavior”, American Journal of Public Health, 91. Galvao, J. (2002). “Access to Antiretroviral Drugs in Brazil”, The Lancet 360. Published online on November 5. Accessed at: image.thelancet.com/extras/01art9038web.pdf on 12/11/02. Garmaise, D. (2003). “Article on the Involvement of People Living with HIV/AIDS for the International Council of AIDS Service Organizations for Submission to the Sexual Health Exchange”, AIDS, 20. Garrett, I. (2000). Betrayal of Trust: The Collapse of Global Public Health. New York: Hyperion Press. ., Carael, M., T raore, M., Mah-Bi, G., Ghys, P .D., Diallo, M.O ., EttiengneTraore, V ., Kale, K., T awil, O O., Traore, P.D., M.O., Ettiengne-T V., Tawil, De Cock, K.M., W iktor iktor,, S.Z., L aga, M. and Greenberg, A.E. (2002). “Increase in Condom Use and Wiktor Decline in HIV and Sexually Transmitted Diseases among Female Sex Workers in Abidjan, Cote d’Ivoire, 1991–1998”, AIDS, 16. Gisselquist, D., Rthenberg, R., P otterat, J. and Drucker Potterat, Drucker,, E. (2002). HIV Infections in Sub-Saharan Africa not Explained by Sexual or Vertical Transmission”, International Journal of STD and AIDS, 13. Golombek, S. (ed.). (2002). What Works in Youth Participation: Case Studies from Around the World. Baltimore, Maryland: International Youth Foundation. Green, E.C. (2001). The Impact of Religious Organizations in Promoting HIV/AIDS Prevention. Revised version of paper presented at “Challenges for the Church: AIDS, Malaria and TB” (Conference Title), Christian Connections for International Health, May 25–26, 2001, Arlington, Va. Green, E.C. and Conde, A. (2000). “Sexual Partner Reduction and HIV Infection”, Sex Transmission Inf, 76. Green, E., Nantulya, V ., Oppong, Y V., Y.. and Harrison, T T.. (2003). Literature Review and Preliminary Analysis of “ABC” Factors (Abstinence, Partner Reduction, Condom Use) in Six Developing Countries. Cambridge: Harvard Center for Population and Development Studies. Greenberg, R.H., W illiams, J.R., Y onkler Williams, Yonkler onkler,, J.A., Saffitz, G.B. and Rimon II, J.G. (1996). How to Select and Work with an Advertising Agency. Field Guide. Baltimore: The Johns Hopkins University, Center for Communication Programs. Greene, M.E., R asekh, Z. and Amen, K.A. (2002). In this Generation: Sexual and Reproductive Health Policies Rasekh, for a Youthful World. Washington: Population Action International. Greimel, H. (2001). DaimlerChrysler to Give AIDS Drugs. Associated Press. Grulich, A.E. and Kaldor Kaldor,, J.M. (2002). “Evidence of Success in HIV Prevention in Africa”, The Lancet, 360. Gupta, G.R. (2000). Gender, Sexuality, and HIV/AIDS: The What, the Why, and the How. The XIIIth International AIDS Conference, July 9–14, 2000, Durban, Plenary Address. Gustavson, D.H., Hawkins, R., Boberg, E., Pingree, S., Serlin, R.E., Graziano, F F.. and Chan, C.L. (1996). “Impact of a Patient-Centered, Computer-based Health Information/Support System”, American Journal of Preventive Medicine, 16. Gysels, M., P ool, R. and Nnalusiba, B. (2002). “Women Who Sell Sex in a Ugandan Trading Town: Life HisPool, tories, Survival Strategies and Risk”, Social Science and Medicine, 54. Hafkin, N. and T aggart, N. (2001). Gender, Information Technology, and Developing Countries: An Analytic Study. Taggart, Washington, DC: AED and Office of Women in Development, Bureau for Global Programs, Field Support and Research, USAID. Hagan, H., McGough, J.P ., Thiede, H., Hopkins, S., Duchin, J. and Alexander J.P., Alexander,, E.R. (2000). “Reduced Injec-tion Frequency and Increased Entry and Retention in Drug Treatment Associated with Needle-Exchange Participation in Seattle Drug Injectors”, Journal of Substance Abuse Treatment, 19. Halperin, D.D. and Bailey Bailey,, R.C. (1999). “Male Circumcision and HIV Infection: 10 Years and Counting”, The Lancet, 354.

Bibliography 319 Harrington, M. (2002). “Putting it Together. As Scale Up to Rx for 3M by 2005 Proceeds, Activist Groups Begin to Lay Groundwork”, Tagline, 9. Treatment Action Group. Accessed at: www.thebody.com/tag/sept02/ aids2002.html on 11/15/02. Haymes, R., W arne, P ., Hunter Warne, P., Hunter,, J. and Miller Miller,, S. (1992). HIV and Sexual Minority Youth. Unpublished Report. Health Communication P artnership. (2003a). Conceptual Framework: Pathways towards Social and Behavioral Partnership. Change in HIV/AIDS. Health Communication Partnership, based at Johns Hopkins Bloomberg School of Public Health/Center for Communication Programs. ———. (2003b). Revised Process and Principles of Strategic Communication for Health: The P-Process, 1997. Health Communication Partnership, based at Johns Hopkins Bloomberg School of Public Health/Center for Communication Programs. ———. (2003c). Strategic Communication Plan for HIV/AIDS Prevention, Care and Support, Maharashtra, India, 2003–2007. Baltimore, MD: Health Communication Partnership, based at Johns Hopkins Bloomberg School of Public Health/Center for Communication Programs. ———. (2003d). Adolescent Reproductive Health Communication Strategy for Bangladesh. Baltimore: Health Communication Partnership, based at Johns Hopkins Bloomberg School of Public Health/Center for Communication Programs. Healthlink W orldwide. (2002). Combat AIDS: HIV and the World’s Armed Forces. Worldwide. Health of Adolescent R efugees P roject (HARP). (2002). Report accessed at: www.rho.org/html/refugee_ Refugees Project progexamples.htm. Hearst, N. and Chen, S. (2003). Condoms for AIDS Prevention in the Developing World—A Review of the Scientific Literature. San Francisco: University of California. Hearst, N., L acerda, R., Gravato, N., Hudes, E.S. and Stall, R. (1999). “Reducing AIDS Risk among Port Lacerda, Workers in Santos, Brazil”, American Journal of Public Health, 89. Helquist, M.J. and R osenbaum, J. (1993). “Providing Anonymous Help and Support”, in W.A. Smith and Rosenbaum, A.B. Helquist (eds.). A World against AIDS. Washington, DC: Academy for Educational Development. Hewitt de Alcantara, C. (2001). The Development Divide in a Digital Age. An Issues Paper. United Nations Research Institute for Social Development. Technology, Business and Society Programmes Paper Number 4. Hilton, A., Thompson, R., Moore-Dempsey Moore-Dempsey,, L. and Janzen, R. (2001). “Harm Reduction Theories and Strategies for Control of Human Immunodeficiency Virus: A Review of the Literature”, Journal of Advanced Nursing, 33. Hoff aigeles, B., W olitski, R., P urcell, D., Gomez, C. and P arsons, J. (2002). Dipping is a Problem Hoff,, C.C., F Faigeles, Wolitski, Purcell, Parsons, among HIV Positive (HIV+) Men Who have Sex with Men (MSM) with HIV- (HIV- and unknown status (HIV) Partners. Presentation at the XIVth International AIDS Conference, July 7–12, 2002, Barcelona. Abstract. Hogle, J.A. (ed.). (2002). What Happened in Uganda? Declining HIV Prevalence, Behavior Change, and the National Response. Project Lessons Learned. Case Study. Washington, DC: USAID, The Synergy Project. Horizons. (2001a). Reducing HIV Infection among Youth: What Can Schools Do? Washington: Population Council/ Horizons Project. ———. (2001b). HIV Voluntary Counseling and Testing among Youth. Results from an exploratory study in Nairobi, Kenya and Kampala and Masaka, Uganda. ———. (2001c). “Peer Education and HIV/AIDS: Past Experience, Future Directions”. ———. (2002a). Greater Involvement of PLHA in NGO Service Delivery: Findings from a Four–Country Study. Washington: Population Council/Horizons Project. Accessed at: www.popcouncil.org/horizons/ressum/plha4 cntry/plha4cntry.html on 6/22/2003. ———. (2002b). “Stigma and Discrimination”, Research Update. Accessed at: www.popcouncil.org/horizons, Washington: Population Council/Horizons Project. ———. (2002c). The Sonagatchi Project: A Global Model for Community Development. Accessed at: www.popcouncil. org.org/horizons/newsletter/horizons(4)_3.html at 11/19/02. ———. (2002d). The Continuum of Care in Action. Indian NGO provides a model of comprehensive clientcentered HIV/AIDS care. Accessed at: www.popcouncil.org/horizons/newsletter/horizons(5)_1.html. Howard-Grabman, L.H. and Snetro, G. (2003). How to Mobilize Communities for Health and Social Change. Baltimore, MD: Health Communication Partnership. Howson, J. (2003). Personal communication, International HIV/AIDS Alliance, June 14, 2003. Humsafar T rust. (2002). Unpublished Report. Mumbai. Trust.

320 Strategic Communication in the HIV/AIDS Epidemic Hunter Hunter,, S. (2001). Observations on Malawi’s COPE-Malawi Project: Report on a Field Visit and Program Review. Unpublished Report. ———. (2002). Supporting and Expanding Community-based HIV/AIDS Prevention and Care Responses. A Report on Save the Children (US) Malawi COPE Project. Hunter illiamson, J. (2000). Children on the Brink. Executive Summary. Updated Estimates and ReHunter,, S. and W Williamson, commendations for Intervention. Washington, DC: The Synergy Project. IC AD. (2001). HIV/AIDS, Injection Drug Use, Harm Reduction and Development. Ottawa: Interagency Coalition ICAD. on AIDS and Development. IC ASO ICASO ASO.. (2002). Adding Infrastructure to the Advocacy Agenda.. Toronto: A Project of the International Council of AIDS Service Organizations. IC ASA HDN K ey Correspondent T eam. (2001). Local Responses to HIV/AIDS. 12th ICASA Ouagadougou. ICASA Key Team. Posted on AF-AIDS Listserve, February 6, 2002. ICR W R esearch Update. (2002). Understanding HIV-related Stigma and Resulting Discrimination in Sub-Saharan ICRW Research Africa. Emerging themes from early data collection in Ethiopia, Tanzania and Zambia. Research Update. Washington: International Center for Research on Women. IHRD. (2001). Drugs, AIDS and Harm Reduction. How to Slow the HIV Epidemic in Eastern Europe and the Former Soviet Union. New York: International Harm Reduction Development (IHRD) of the Open Society Institute. ILO ILO.. (2001). An ILO Code of Practice on HIV/AIDS and the World of Work. Geneva: International Labour Office, Global Programme on HIV/AIDS and the World of Work. Imrie, J., F enton, K.A. and Billington, A. (1999). “HIV Prevention and Homosexual Men: Should We be Fenton, Optimistic about the New Millennium? Editorial”, Sex Transm Inf, 75. In F ocus. (2001). Youth Livelihoods and HIV/AIDS. Washington: Focus on Young Adults. Focus. infoDev infoDev.. (2001). Facilitating Communications in Response to HIV/AIDS in South-East Asia. UNAIDS Case Study. Best Practice Collection. Inter-Agency Standing Committee. (n.d.). Sub-working Group on HIV/AIDS in Complex Emergencies: Controlling the Spread of HIV/AIDS in Complex Emergencies in Africa. International HIV/AIDS Alliance. (1998). Beyond Awareness Raising: Community Lessons about Improving Responses to HIV/AIDS. Accessed at: www.aidsalliance.org/_docs/index_eng.htm. ———. (1999). “NGO Support Work”, Alliance News, 4. ———. (2001). Expanding Community-based Support for Orphans and Vulnerable Children. Workshop Report. IRC. (2003). Protecting the Future: HIV Prevention, Care and Support among Displaced and War-Affected Populations. Bloomfield: Kumarian Press. Jacoby okkens, P Jacoby,, R. and F Fokkens, P.. (2001). Proceedings from the International EE 2000 Event. Baltimore, MD: Johns Hopkins University Center for Communication Programs. JamesTraore, T .A. (2001). “Developmentally Based Interventions and Strategies: Promoting Reproductive James-T T.A. Health and Reducing Risk among Adolescents”, Focus Tool Series, 4. Washington: Focus on Young Adults. Jana, S. (2002). Personal communication with Neill McKee, December 21, 2002. Jana, S., Bandvopadhyay Bandvopadhyay,, N., Saha, A. and Kanti Dutta, M. (1999). “Creating an enabling environment. Lessons learnt from the Sonagatchi Project, India”, Research for Sex Work, 2. Accessed at: www.med.vu.nl/hcc/ artikelen/jana.htm on 11/19/02. Janz, N.K. and Becker Becker,, M.H. (1984). “The Health Belief Model: A Decade Later”, Health Education Quarterly, 11. Jenkins, C., R ahman, H. and Jana, S. (2002). Monitoring Violence against Sex Workers. Presentation at the Rahman, XIVth International AIDS Conference, July 7–12, 2002, Barcelona, Abstract. Jensen, M. (2002). The African Internet. A status report. Accessed at: www3.sn.apc.org/africa/afstat.htm on 1/22/03. JHU/CCP JHU/CCP.. (1985). Pop Music and Sexual Responsibility: Reaching Young People in Latin America. Accessed at: www.jhuccp.org/la/regional/tandj.shtml.. ———. (1997). Process and Principles of Strategic Communication for Health: The P-Process. The Johns Hopkins University Center for Communication Programs, Baltimore. ———. (2001). ISHI Youth HIV/AIDS Campaign in Tanzania.

Bibliography 321 JHU/CCP JHU/CCP.. (2002a). Vivre Positivement. “Living Positively” Program in Francophone Africa features new video and comic book to combat HIV/AIDS stigma, press release, February 13, 2003. Accessed at: www.jhuccp.org/ pressroom/2003/02-12.shtml on 2/15/03. ———. (2002b). Ghana Launches National Program to Encourage Compassion and Support for People Living with HIV/AIDS. Muslim and Christian Leaders to Help Implement Phase 2 of Stop AIDS, Love Life, press release, June 6. Accessed at: www.jhuccp.org/pressroom/2002/11-06.shtml . ———. (2002c). The Caring Understanding Partners (CUP) Program Brochure. Baltimore: Johns Hopkins University Center for Communication Programs. JHU/CCP/CEC AF A. (1999). Men, Sex and Soccer. Break the Silence—Talk about AIDS. Nairobi, Kenya, October JHU/CCP/CECAF AFA. 23–December 1. Juma, M. (2001). How Youth Learn about HIV Voluntary Counseling and Testing and Reproductive Health Services in Kampala, Uganda. Poster presented at the XIIth International Conference on AIDS and STDs in Africa. December 9–13, Ouagadougou, Burkina Faso. Kabir Kabir,, R. (2002). Assessment and Analysis of the Situation of Adolescent Boys in Bangladesh. Dhaka: UNICEF. Kaleeba, N., Kalibala, S., Kaseje, M., Ssebbanja, P ., Anderson, S., van P raag, E., T embo, G. and Katabira, P., Praag, Tembo, E. (1997). “Participatory Evaluation of Counseling, Medical and Social Services of the AIDS Support Organization (TASO) in Uganda”, AIDS Care, 9. Kalichman, S.C. (1998). “Post-exposure Prophylaxis for HIV Infection in Gay and Bisexual Men: Implications for the Future of HIV Prevention”, American Journal of Preventive Medicine, 15. Kalichman, S.C. and Hospers, H. (1997). “Efficacy of Behavioral Skills Enhancement HIV Risk Reduction Interventions in Community Settings”, AIDS, 11. Kane, A., Lloyd, J., Zaffran, M., Kane, M. and Simonsen, L. (1999). “Transmission of Hepatitis B, Hepatitis C, and Human Immunodeficiency Virus through Unsafe Injections in the Developing World: Model-based Regional Estimates”, WHO Bulletin, 77. Katz, M.H., Schwarcz, S.K., K ellogg, T .A., Klausner ., Gibson, S. and McF arland, W Kellogg, T.A., Klausner,, J.D., Dilley Dilley,, J.W J.W., McFarland, W.. (2002). “Impact of Highly Active Antiretroviral Treatment on HIV Seroincidence among Men Who have Sex with Men: San Francisco”, American Journal of Public Health, 92. Kavi, A.R. (2002). Personal Interview. Mumbai, India: The Humsafar Trust. Kellogg, T ., McF arland, W T., McFarland, W.. and Katz, M. (1999). “Recent Increases in HIV Seroconversions among Repeat Anonymous Testers in San Francisco. [letter]”, AIDS, 13. Kelly elly,, K. and Kalichman, S.A. (1995). “Increased Attention to Human Sexuality can Improve HIV/AIDS Prevention Efforts: Key Research Issues and Directions”, Journal of Consulting and Clinical Psychology, 63. Kelly arker elly,, K. and P Parker arker,, W W.. (2001). From People to Places: Prioritizing Contextual Research for Social Mobilization against HIV/AIDS. Conference Presentation, AIDS in Context Conference. April 4–7, 2001, South Africa: University of the Witwaterstrand. Kelly arker elly,, K., P Parker arker,, W W.. and Lewis, G. (2001). “Reconceptualizing Behaviour Change in the HIV/AIDS Context”, in C. Stones (ed.). Socio-political and Psychological Perspectives on South Africa. London: Nova Science. Kenny enny,, C. (2001). “Information and Communication Technologies and Poverty”, TechKnowLogia, July/August. Kerry erry,, K. and Margie, C. (1996). Cost Effective AIDS Awareness Program on Commercial Farms in Zimbabwe. Presented at the International Conference on AIDS, Vancouver, Canada, 7–12 July, 1996, Vancouver, Canada. Khan, Z.R. and Arefeen, H.K. (1992). Prostitution in Bangladesh. (Unpublished Report). Dhaka: Centre for Social Studies. Kidd, R. and Clay Clay,, S. (2003). Understanding and Challenging HIV Stigma: Toolkit for Action. Trainers Guide. Washington, DC: CHANGE/ICRW. Accessed at: www.changeproject/technical/hivaids/stigma.html. Kilmarx, P .H., P alanuvej, T ., Limpakarnjanarat, K., Chitvarakorn, A., St. L ouis, M.E. and Mastro, T .D. P.H., Palanuvej, T., Louis, T.D. (1999). “Seroprevalence of HIV among Female Sex Workers in Bangkok: Evidence of Ongoing Infection Risk after the ‘100% Condom Program’ was Implemented”, Journal of Acquired Immune Deficiency Syndrome, 21. Kim, Y .M., K ols, A., Bonnin, C., Richardson, P oter Y.M., Kols, P.. and R Roter oter,, D. (2001). “Client Communication Behaviors with Health Care Providers in Indonesia”, Patient Education and Counseling, 45. Kincaid, D.L. (2002). “Drama, Emotion, and Cultural Convergence”, Communication Theory, 12. Kincaid, D.L., Whitney Whitney,, E.E. and Shahjahan, M. (2000). Impact of the Shabuj Shathi Television Drama of Bangladesh: Key Findings. [Unpublished paper]. Accessed at: www.jhuccp.org. King, R. (1999). Sexual Behavioral Change for HIV: Where have Theories Taken Us? Geneva: UNAIDS.

322 Strategic Communication in the HIV/AIDS Epidemic Kinsman, J., Harrison, S., K engeya-Kayondo, J., Kanyesigye, E., Musoke, S. and Whitworth, J. (1999). Kengeya-Kayondo, “Implementation of a Comprehensive AIDS Education Programme for Schools in Masaka District, Uganda”, AIDS Care, 11. Kippax, S. and R ace, K. (2003). “Sustaining Safe Practice: Twenty Years On”, Journal of Social Science and Race, Medicine (in press). Kiragu, K. (2001). “Youth and HIV/AIDS: Can We Avoid the Catastrophe?”, Population Report, Series L, No. 12. Baltimore: The Johns Hopkins Bloomberg School of Public Health, Population Information Program. Kirby Kirby,, D. (2001). Emerging Answers: Research Findings on Programs to Reduce Teen Pregnancy. Washington, DC: National Campaign to Prevent Teen Pregnancy. Kirungi, F F.. (2001). “Uganda Beating Back AIDS”, Africa Recovery 2001, 15. Kisubi, W ., F armer ., Sturgis, R., Lule, E.L., Huber enn, T ., F arrell, B., Oduol, E., Bellamine, H. W., Farmer armer,, F F., Huber,, D., F Fenn, T., Farrell, and Shumba, P P.. (1997). An African Response to the Challenge of Integrating STD/HIV-AIDS Services into Family Planning Programs. Pathfinder International. Klepp, K.I., Ndeki, S., Leshabari, M.T ., Hannan, P .J. and L yimo, B.A. (1997). “AIDS Education in Tanzania: M.T., P.J. Lyimo, Promoting Risk Reduction among Primary School Children”, American Journal of Public Health, 87. Klovdahl, A.S. (1985). “Social Networks and the Spread of Infectious Diseases: The AIDS Example”, Social Science and Medicine, 21. Knebel, E. (2000). “The Use and Effect of Computer-based Training in Health Care: What do We Know?”, Operations Research Issue Papers, 1. Bethesda, Maryland: USAID by Quality Assurance Project (QAP), Center for Human Services, University Research Co LLC. Kropsch, L.J., Azenha, M.F ., T aglietta, M.F .B., T ironi, M.A.L. Nunes, J.S.D., Campos, R.L.B. and Kaufman, M.F., Taglietta, M.F.B., Tironi, A. (2002). Strategic Planning for the Brazilian National Response to the AIDS Pandemic: Principal Results. Presentation at the XIVth International AIDS Conference—July 7–12, 2002, Barcelona. Abstract. Kun, K.E. (1998). “Vaginal Drying Agents and HIV Transmission”, International Family Planning Perspectives, 24. Kyenkya-Isabirye, M. (1990). “The Life and Times of Phylly Lutaaya, Ugandan Singer”, Development Communication Report, 71. L amptey ., W igley amptey,, P P., Wigley igley,, M., Carr Carr,, D. and Collymore, Y Y.. (2002). “Facing the HIV/AIDS Pandemic”, Population Bulletin, 57. L ange, J.M.A., Saba, J., Haverkamp, G., Gray ., Ndugwa, C., Coovadia, H.M., Gray,, G., McIntyre, J., Mmiro, F F., Moodley ., Okong, P ., vonBriesen, H., Goudsmit, J., Biberfeld, Moodley,, J., Kilewo, C., Massawe, A., Kituuka, P P., P., G., Grulich, A. and W everling, G.J. (2002). “Efficacy of Three Short-course Regimens of Zidovudine and Weverling, Lamivudine in Preventing Early and Late Transmission of HIV-1 from Mother to Child in Tanzania, South Africa, and Uganda (Petra study): A Randomized, Double-blind, Placebo-controlled Trial”, The Lancet, 359. L aukamm-Josten, U., Mwizarubi, B.K., Outwater aladez, J.J., Nyamwaya, D., Outwater,, A., Mwaijonga, C.L., V Valadez, Swai, R., Saidel, T T.. and Nyamuryekung’e, K. (2000). “Preventing HIV Infection through Peer Education and Condoms Promotion among Truck Drivers and Their Sexual Partners in Tanzania, 1990–1993”, AIDS CARE, 12. L awyers Collective HIV/AIDS Unit. (2002). Lawyers Collective HIV/AIDS Unit. Accessed at: www.hri.ca/ partners/lc/unit/ on 09/08/02. oung, S. and Barth, S. (1998). Delivery of Improved Services for Health Project, Lewicky Lewicky,, N., Kiragu, K., Y Young, Uganda: Evaluation of the Safer Sex or AIDS Campaign. Unpublished report. Baltimore: Johns Hopkins School of Public Health, Center for Communication Programs. L ong, D.L. and Ankrah, E.M. (eds.). (1996). Women’s Experience with HIV/AIDS. New York: Columbia University Press. L ongfield, K., Agha, S., K usanthan, T ., Klein, M. and Berman, J. (2001). Non-use of Condoms: What Role do Kusanthan, T., Supply, Demand, and Acceptance Play in the “Condom Gap?” Paper Presented at the International Conference on AIDS and STDs in Africa, Ouagadougou, Burkina Faso. L ongfield, K., Klien, M. and Berman, J. (2002). “Criteria for Trust and How Trust Affects Sexual Decision Making among Youth”, PSI Research Division, Working Paper No. 51. Washington, DC: AIDSMark/Population Services International.

Bibliography 323 Luke, N. and K urz, K.M. (2002). Cross-generational and Transactional Sexual Relations in Sub-Saharan Africa: Kurz, Prevalence of Behavior and Implications for Negotiating Safer Sexual Practices. Washington: AIDSMark Report, ICRW and Population Services International. Magnani, R.J. and Karim, A.M. (2002). ABCs: The Youth Perspective. Accessed at: www.synergyaids.com/ Documents/6_Robert_Magnani.pdf on 3/12/03. Makinwa, B. and O’Grady O’Grady,, M. (eds.). (2001). HIV/AIDS Prevention Collection. FHI/UNAIDS Best Practices in Prevention. Makwaya, C. and Badru, A. (2001). Voluntary Counseling and Testing: Consumer Baseline Survey Report. AMREF. Maman, S., Mbwambo, J. and Hogan, M. (2001). “HIV and Partner Violence: Implications for HIV Voluntary Counseling and Testing Programs in Dar es Salaam, Tanzania”, Horizons Project Report. Washington: The Population Council. Maman, S., Mbwambo, J.K., Hogan, N.M., Kilonzo, G.P ., Campbell, J.C., W eiss, E. and Sweat, M.D. G.P., Weiss, (2002). “HIV-positive Women Report More Lifetime Partner Violence: Findings from a Voluntary Counseling and Testing Clinic in Dar es Salaam, Tanzania”, American Journal of Public Health, 92. Mani, N.M. (2002). Country Profiles: USAID Multi-Sectoral Programs. Draft, USAID, Bureau for Africa, Office of Sustainable Development. Mann, J.M., Gruskin, S., Grodin, M.A. and Annas, G.J. (1999). Health and Human Rights—A Reader. New York and London: Routledge. MAP Network. (2001). The Status and Trends of HIV/AIDS/STI Epidemics in Asia and the Pacific. Provisional report, Melbourne, Australia, 4 October. Accessed at: www.unaids.org/hivaidsinfo/statistics/MAP/ on 7/11/03. Mar P ujadas, R.M., Obasi, A. and Mosha, F Pujadas, F.. (2002). “Herpes Simplex Virus Type 2 Infection Increases HIV Incidence: A Prospective Study in Rural Tanzania”, AIDS, 16. Martin, S.L., Kilgallen, B., Ong T sui, A., Maitra, K., K umar Singh, K. and K upper Tsui, Kumar Kupper upper,, L.L. (1999). “Sexual Behaviors and Reproductive Health Outcomes”, JAMA, 287. Marum, E., Owiti, A., Nganaga, L., W ambua, W ., Achieng, R., Onyango, A., Oparkar Wambua, W., Oparkar,, L., Odawa, L. and Muitherero, C. (2002). Rapid Increase in Utilization of Voluntary Counseling and Testing through a Community Based Model in Kibera Slum, Nairobi, Kenya. Presentation at the XIVth International AIDS Conference, July 7–12, 2002, Barcelona. Abstract. Maswanya, E., Moji, K., Horiguchi, I., Nagata, K., Aoyagi, K., Honda, S. and T akemoto, T Takemoto, T.. (1999). “Knowledge, Risk Perception of AIDS and Reported Sexual Behaviour among Students in Secondary Schools and Colleges in Tanzania”, Health Education Research, 14. McDermott, P P.. and Sussman, L. (2002). Orphans and Other Vulnerable Children. Second Consultative Meeting in Rethinking HIV/AIDS and Development: A Review of USAID’s Progress in Africa. March 12–13, 2002, Presentation. McF arland, W ., Gwanzura, L. and Bassett McFarland, W., Bassett, M.T M.T.. (1999). “Prevalence and Incidence of Herpes Simplex Virus Type 2 Infection among Male Zimbabwean Factory Workers”, Journal of Infectious Diseases, 180. McF arland, W ., Schwarcz, S., K ellogg, T .A., Hsu, L., Kim, A. and Katz, M.H. (2000). The Implications of McFarland, W., Kellogg, T.A., Highly Active Antiretroviral Treatment for HIV Prevention: The Case of Men Who have Sex with Men (MSM) in San Francisco. Paper Presented at the XIIth International Conference on AIDS, Durban. McK ee, N. (1992). Social Mobilization and Social Marketing in Developing Communities. Penang: Southbound. McKee, McK ee, N., Manoncourt, E., Chin, S.Y McKee, S.Y.. and Carnegie, R. (eds.). (2000a). Involving People, Evolving Behavior. New York: UNICEF, Penang, Malaysia: Southbound. ———. (2000b). “Motivation to Act”, Chapter 5 of Involving People, Evolving Behaviour. New York and Penang: Southbound, UNICEF. ———. (2000c). “Making Change Possible”, Chapter 5 of Involving People, Evolving Behaviour. New York and Penang: Southbound, UNICEF. McK ee, N., Aghi, M., Carnegie, R. and Shahzadi, N. (2003). “Sara: A Role Model for African Girls As They McKee, Face HIV/AIDS”, in A. Singhal and W.S. Howard (eds.). HIV/AIDS and African Children: Health Challenges and Educational Opportunities. Athens, OH: Ohio University Press. McNab, W W.. (1981). “Advocating Elementary Sex Education”, Health Education, 12. Meda, N., Ndoye, I., M’Boup, S., W ade, A., Ndiaye, S., Niang, C., Sarr ., Diop, I. and Careal, M. (1999). Wade, Sarr,, F F., “Low and Stable HIV Infection Rates in Senegal: Natural Course of the Epidemic or Evidence for Success of Prevention?”, AIDS 1999, 13.

324 Strategic Communication in the HIV/AIDS Epidemic Mehringer Mehringer,, A. (2002). Breaking the Culture of Silence in Refugee Camps. CARE Policy and Advocacy Unit. Accessed at: www.careusa.org/newsroom/featurestories/2002/jun/06192002_refugee.asp on 7/19/02. Mens, L. (1996). “Peer Education Project for Migrant and Drug-addicted Prostitutes”, International Conference on AIDS, 11. Mercer enton, K.A. and W elling, K. (2002). Changing Patterns of Homosexual Partnerships Mercer,, C.H., Johnson, A.M., F Fenton, Welling, in Britain: Evidence from the 1990 and 2000 National Survey of Sexual Attitudes and Lifestyles (Natsal). London School of Hygiene and Tropical Medicine and National Centre of Social Research. Presented at the 14th International AIDS Conference, July 7–12, 2002, Barcelona. Merchant, I. (1998). “Kitschy as ever, Bollywood is Branching Out”, The New York Times, November 22. Minyi, S. (2002). “OneWorld Radio Network to Fight AIDS”, Report posted on iConnect Online—Applying Knowledge to Development. Accessed at: www.iconnect-online.org/base. Mistry Mistry,, N. and Plumley Plumley,, B. (2002). HIV/AIDS Workplace Protocols and Practices for Businesses in Resource Poor Settings. Global Business Coalition on HIV/AIDS. Mohammed, S. (2001). “Personal Communication Networks and the Effects of an Entertainment–Education Radio Soap Opera in Tanzania”, Journal of Communication, April–June, 6. MOHFW MOHFW.. (2001). HIV in Bangladesh: Where is it Going? Background Document for the Dissemination of the Third Round of National HIV and Behavioural Surveillance. Bangladesh: National AIDS/STD Program, Directorate General of Health Services, Ministry of Health and Family Welfare. Morison, L., Scherf aine, K., W est, B., Coleman, R. and W alraven, G. (2001). “The LongScherf,, C., Ekpo, G., P Paine, West, Walraven, term Reproductive Health Consequences of Female Genital Cutting in Rural Gambia: A Community-based Survey”, Tropical Medicine International Health, 6. MRC Tropical Epidemiology Group, Department of Infectious and Tropical Diseases, London School of Hygiene and Tropical Medicine, London, UK. Accessed at: www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11555430&dopt= Abstract. Moriuchi, M., Moriuchi, H., W illiams, R. and Straus, S.E. (2000). “Herpes Simplx Virus Infection Induces Williams, Replication of Human Immunodeficiency Virus Type 1”, Virology, 278. Mugabe, M. (2000). Personal Communication, PMTCT Officer. Kampala: UNICEF. Myer Myer,, L., Mathews, C., Little, F F.. and Karim, S.S.A. (2001). “The Fate of Free Male Condoms Distributed to the Public in South Africa”, AIDS 2001, 15. NAM. (2002). HIV Therapy, Information Series for HIV-Positive People. (Based on the British HIV Association treatment guidelines), London. Narain, J.P ., Chela, C. and P raag, E.V J.P., Praag, E.V.. (1998). Planning and Implementing HIV/AIDS Care Programmes: A Step-by-Step Approach. New Delhi: WHO Regional Office of South-East Asia. National Cancer Institute. (2002). Making Health Communication Programs Work: A Planner’s Guide. 2nd edition. Bethesda: National Cancer Institute. Ndabamenye, P P.. (2000). Rapport de Recherche Qualitative de Base aupres des Jeunes de la JOC/Archdiocese de Kigali. Kigali Rwanda: Family Health International and Jeunesse Ouvriere Chretienne. Nduati, R., John, G., Mbori-Ngacha, D., Richardson, B., Overbaugh, J., Mwatha, A., Ndinya-Achola, J., Bwayo, J., Onyango, F .E., Hughes, J. and Kreiss, J. (2000). “Effect of Breastfeeding and Formula Feeding F.E., on Transmission of HIV-1: A Randomized Clinical Trail”, JAMA, 283. Ng’weshemi, J., Boerma, T ., Bennet, J. and Schapink, D. (eds.). (1997). HIV Prevention and AIDS Care in T., Africa: A District Level Approach. Amsterdam: Royal Tropical Institute. NIAID. (2001). Scientific Evidence on Condom Effectiveness for STD Prevention. Washington, DC: National Institute of Allergy and Infectious Diseases, National Institute of Health. Accessed at: www.niaid.nih.gov/dmid/stds/ condomreport.pdf. NIC. (2002). The Next Wave of HIV/AIDS: Nigeria, Ethiopia, Russia, India and China. ICA 2002–04 D. Washington: National Intelligence Council. Nix, H.L. (1977). “The Community and its Involvement in the Study, Planning, Action Process. U.S. Department HEW”, Public Health Service, HEW Publications, No. (CDC). Nyblade, N. (2003). Understanding HIV-related Stigma and Discrimination. A Multi-Country Study in SubSaharan Africa. Presentation to the CORE Initiative, July 8, 2003, Washington, DC. Odallo, D. (1997). “Kenya’s Youth Variety Show”, Integration, 53.

Bibliography 325 O’Grady O’Grady,, M. and Miller Miller,, N.N. (2001). “The Civil-Military Project on HIV/AIDS: An International Joint Venture for HIV/AIDS Prevention”, in M. Bunmi and M. O’Grady (eds.). FHI/UNAIDS Best Practices in HIV/AIDS Prevention Collection. Case Study Sixteen. UNAIDS and Family Health International. Olkkonen, A. (2002). Negotiating an Effective Community Response: Addressing AIDS-Related Stigma in Maharashtra, India. Paper Prepared for the Johns Hopkins Bloomberg School of Public Health MPH Integrating Experience. ORG Centre for Social R esearch. (2002). “Executive Summary, Internal Document”, in S. Panda, A. Chatterjee, Research. A.S. Abdul-Quader (eds.). Living with the AIDS Virus: The Epidemic and the Response in India. New Delhi: Sage. O’Sullivan, G.A., Y onkler Yonkler onkler,, J.A., Morgan, W W.. and Merritt, A.P A.P.. (2002). A Field Guide to Designing a Health Communication Strategy. Baltimore, MD: The Johns Hopkins University Bloomberg School of Public Health, Center for Communication Programs. Oussama, T ., V erster eilly T., Verster erster,, A. and O’R O’Reilly eilly,, K.R. (1995). “Enabling Approaches for HIV/AIDS Prevention: Can We Modify the Environment and Minimize the Risk?”, AIDS, 9. PakenhamWalsh, N. (2002). “Strengthening Local Capacities to Create and Adapt Healthcare Information”, akenham-W Research Report No 11, October 2002, International Institute for Communication and Development (IICD). Palmer almer,, A. (2002). “Reaching Youth Worldwide; Johns Hopkins Center for Communication Programs, 1995–2000”, Working Paper No. 6. Baltimore: Johns Hopkins University, Bloomberg School of Public Health, Population Communication Services. Panos. (1998). AIDS and Men: Taking Risks or Responsibilities. Martin Foreman (ed.). London: Panos Institute. Parker arker,, W W.. (1997). “Action Media: Consultation, Collaboration and Empowerment”, Health Promotion Africa Media Review, 11. Parker ., Oyosi, S., K elly ox, S. (2002). On the Move. The Response of Publich Transport Commuters arker,, W W., Kelly elly,, K. and F Fox, to HIV/AIDS in South Africa. Pretoria: Center for AIDS Development, Research and Evaluation (Cadre) and the Department of Health. Accessed at: www.cadre.org.za/pdf/on%20the%20Move%20Final%20Report.pdf. Parker ttawell, K., P ulerwitz, J. and Brown, L. (2002). HIV/AIDS-related Stigma arker,, R. and Aggleton, P P.. with A Attawell, Pulerwitz, and Discrimination: A Conceptual Framework and Agenda for Action. Washington: Horizons Program. Parkhurst, J.O J.O.. (2001). Myths of Success: The Uses and Misuses of Ugandan HIV data (Draft). Paper Given at the VIth UKFIET Oxford International Conference for Education and Development. September 19–21, 2001, Oxford, UK. Paterson, G. (2002). Church Leadership and HIV/AIDS: The New Commitment. Discussion Paper 001. Ecumenical Advocacy alliance. (www.c-alliance.ch). essis, D., Chaviano, A. and Bailey Patterson, B.K., L anday Landay anday,, A., Siegel, J.N., Flener Flener,, Z., P Pessis, Bailey,, R.C. (2002). “Susceptibility to Human Immunodeficiency Virus-1 Infection of Human Foreskin and Cervical Tissue Grown in Explant Culture”, American Journal of Pathology, 161. Perloff erloff,, R.M. (2001). Persuading People to have Safer Sex: Applications of Social Science to the AIDS Crisis. Mahwah, NJ: Lawrence Elrbaum Associates. Piot, P P.. (2000). “AIDS, Men make a Difference”, Message for World AIDS Day 2000 from Peter Piot, Executive Director, UNAIDS Challenge Negative Cultural Perceptions on Masculinity HIV/AIDS. ———. (2002). Testimony to the hearing of the Committee on Foreign Relations of the United States Senate on Halting the Global Spread of HIV/AIDS: The Future of US Bilateral and Multilateral Responses. Washington, 13 February. Piotrow .T ., Meyer Piotrow,, P P.T .T., Meyer,, R. and Zulu, B.A. (1992). “AIDS and Mass Persuasion”, in Jonathan Mann, D.J.M. Tarantola and T.W. Netter (eds.). AIDS in the World, Cambridge, MA: Harvard University Press. Piotrow .T ., Kincaid, D.L., Rimon II, J.G. and Rinehart, W Piotrow,, P P.T .T., W.. (1997). Health Communication: Lessons from Family Planning and Reproductive Health. Westport: Praeger. Piotrow .T Piotrow,, P P.T .T.. and Kincaid, D.L. (2001). “Strategic Communication for International Health Programs”, in R.E. Rice and C.K. Atkin (eds.). Public Communication Campaigns, Third Edition. Thousand Oaks: Sage Publications, Inc. Piotrow .T ossard, E. (2003). “Entertainment–Education in Public Health Interventions”, in Piotrow,, P P.T .T.. and de F Fossard, M. Cody, E. Rogers and A. Singhal (eds.). Entertainment–Education: A Communication Strategy for Social Change. Mahway, NJ: Lawrence Erlbaum Associates. Population Council. (2001). Power in Sexual Relations: An Opening Dialogue among Reproductive Health Professions. New York: The Population Council, Inc.

326 Strategic Communication in the HIV/AIDS Epidemic Power ower,, L., Kinniburgh, J. and Cairns, G. (2002). Prevalence and Experiences of Discrimination against People with HIV. Presentation at the XIVth International AIDS Conference, July 7-12, 2002, Barcelona. PRB. (2001). Youth in Sub-Saharan Africa: A Charbook on Sexual Experience and Reproductive Health. MEASURE Communication Project. Washington, DC: Population Reference Bureau. Preble, E.A. and Piwoz, E.G. (2002). Prevention of Mother-to-Child Transmission of HIV in Asia: Practical Guidance for Programs, Linkages Project, Academy for Educational Development, Washington, DC. PSI. (2002a). Profile. New Hope with New Start. Accessed at: www.psiwash.org/resources/pubs/vct.html. PSI. (2002b). Sanjay Chaganti, “Operation Lighthouse” HIV/AIDS Prevention Director, PSI/Mumbai: www.psi. org/news/081602a.html. PV O -USAID. (2002). Promising Practices on Multi-sectoral Approaches to HIV/AIDS. Steering Committee for PVO Multi-sectoral Approaches to HIV/AIDS. Draft. R akesh, S. (2002). The Milan Project. New Delhi: Naz Foundation (India) Trust. ijgert, J.P ., Mason, F ., Ndowa, C. and Maposhere, C. (2001). “Constraints Faced by Sex WorkR ay ay,, S., van W Wijgert, J.P., F., ers in Use of Female and Male Condoms for Safe Sex in Urban Zimbabwe”, Journal of Urban Health: Bulletin of the New York Academy of Medicine, 78. R eeves, P P.. (2000). “Coping in Cyberspace: The Impact of Internet Use on the Ability of HIV-Positive Individuals to Deal with Their Illness”, Journal of Health Communication, 5. R eid, G. and Costigan, G. (2002). Revisiting “The Hidden Epidemic” A Situation Assessment of Drug Use in Asia in the Context of HIV/AIDS. New York: The Center for Harm Reduction. R eynolds, S.J., Risbud, A.R., Shepherd, M.E., Zenilman, J.M., Brookmeyer aranjape, R.S., Divekar Brookmeyer,, R.S., P Paranjape, Divekar,, A.D., Gangakhedkar ., Bollinger Gangakhedkar,, R.R., Ghate, M.V M.V., Bollinger,, R.C. and Mehendale, S.M. (2003). “Recent Herpes Simplex Virus Type 2 Infection and Risk of Human Immunodeficiency Virus Type 1 Acquisition in India”, Journal of Infectious Diseases, 187. Richens, J., Imrie, J. and W eiss, H. (2003). “Sex and Death: Why does HIV Continue to Spread When So Weiss, Many People Know about the Risks?”, Journal of Research Statistics Soc, 166. Rideout, V V.. (2001). Generation Rx.com. How Young People Use the Internet for Health Information. California: A Kaiser Family Foundation Survey. Rietmeijer olitski, R.J., F ishbein, M., Corby Rietmeijer,, C.A., W Wolitski, Fishbein, Corby,, N.H. and Cohn, D.L. (1998). “Sex Hustling, Injection Drug Use, and Non-gay Identification by Men Who have Sex with Men. Associations with High-risk Sexual Behaviors and Condom Use”, Sexually Transmitted Diseases, 25. R obertson, A. and Minkler Minkler,, M. (1994). “New Health Promotion Movement: A Critical Examination”, Health Education Quarterly, 21. R obinson, J.P J.P.. and Levy Levy,, M. (1986). The Main Source. Beverly Hills, Ca: Sage. R ogers, E.M. (1995). Diffusion of Innovations: Fourth Edition. New York: Free Press. R ojanapithayakorn, W W.. and Hanenberg, R. (1996). “The 100% Condom Program in Thailand”, AIDS, 10. R osenstock, I. (1974). “Historical Origins of the Health Belief Model”, Health Education Monograph, 2. R ossi, P ., F reeman H. and Lipsey P., Freeman Lipsey,, M. (1999). Evaluation: A Systematic Approach. Thousand Oaks: Sage Publications. R otary International. (2002). Rotary Responds to AIDS. Evanston: Rotary International. Accessed at: www.rotary. org/programs/aids/. R owley owley,, J.T J.T.. and Anderson, M. (1994). “Modeling the Impact and Cost-effectiveness of HIV Prevention Efforts”, AIDS 1994, 8. Runganga, A., Pitts, M.K. and McMaster McMaster,, J. (1992). “The Use of Herbal and Other Agents to Enhance Sexual Experiences”, Social Science and Medicine, 35. Russon, C. (2000). Evaluation of the Sara Communication Initiative: Final Summary. Michigan: The Evaluation Center, Western Michigan University. SA fAIDS. (2001). “New Start HIV VCT Initiative in Zimbabwe”, SAfAIDS News, 9. SAfAIDS. Sakondhavat, C., W erawatanakul, Y ., Bennett, A., K uchaisit, C. and Suntharapa, S. (1997). “Promoting Werawatanakul, Y., Kuchaisit, Condom-only Brothels through Solidarity and Support for Brothel Managers”, International Journal of STD AIDS, 8. Salunke, S.R., Shaukat, M., Hira, S.K. and Jagtap Jagtap, M.R. (1998). “HIV/AIDS in India: A Country Responds to a Challenge”, AIDS, 12. Sangram. (n.d.). Of Veshyas, Vamps, Whores and Women. Sangli, India.

Bibliography 327 Sarath, C. (1999). Interview, 3 August. Cited in Busza, J.R. (2001). “Promoting the Positive: Responses to Stigma and Discrimination in Southeast Asia”, AIDS Care, 13. Saunders, S.G. and Helquist, M. (1989). Extending the Role of AIDS Hotlines in AIDS Prevention Programs in Developed and Developing Countries. Poster presentation, 5th International Conference on AIDS, Montreal, Canada. Save the Children. (2002a). Gender and HIV/AIDS: Guidelines for Integrating a Gender Focus into NGO Work on HIV/AIDS. UK: Save the Children. ———. (2002b). HIV and Conflict: A Double Emergency. Scalway Scalway,, T T.. and Deane, J. (ed.). (2002a). Critical Challenges in HIV Communication. A Perspective Paper from the Panos Institute. London: Panos. Scalway Scalway,, T T.. (2002b). Who are These Guys? Pan American Health Organization, Perspectives in Health, 6. Schwartlander alker ., McGreevey ., Opuni, M., F orsythe, Schwartlander,, B., Stover Stover,, J., W Walker alker,, N., Bollinger Bollinger,, L., Gutierrez, J.P J.P., McGreevey,, W W., Forsythe, S., K umaranayake, L., W atts, C. and Bertozzi, S. (2001). “Resource Needs for HIV/AIDS”, Science, 29. Kumaranayake, Watts, Scott, N. (2001). Meeting Real Information Needs through Telecentres. Accessed at: www.iconnect-online.org and www.gamos.org/Projects/Telecentres/telecentres.htm. SEA-AIDS. (2001). Project Report by S. Phongphit. Accessed at: www.iconnect-online.org and www.inet.co.th/ org/unaids. Segal, L., Cole, C.F uld, J. (2002). “Developing an HIV/AIDS Education Curriculum for Takalani C.F.. and F Fuld, Sesame, South Africa’s Sesame Street”, Early Education and Development, 13. Shaffer .A., Bhadrakom, C., Siriwasin, W ., Y oung, N.L, Chotpitayasunondh, Shaffer,, N., Chuachoowong, R., Mock, P P.A., W., Young, oongpisuthipong, A., Chinayon, P ., Karon, J., Mastro, T .D. and Simonds, R.J. T., Chearskul, S., R Roongpisuthipong, P., T.D. (1999). “Short-course Zidovudine for Perinatal HIV-1 Transmission in Bangkok, Thailand: A Randomized Controlled Trial. Bangkok Collaborative Perinatal HIV Transmission Study Group”, The Lancet, 353. Shelton, J. and Johnston, B. (2001). “Condom Gap in Africa: Evidence from Donor Agencies and Key Informants”, BMJ, 323. Shtarkshall, R. and Soskolne, V V.. (2000). Migrant Populations and HIV/AIDS. Paris: UNESCO/UNAIDS. Shutes, E., Vwalika, C., Kasonde, P ., Sinkala, M., Kankasa, C., Allen, S., Aldrovandi, G., K uhn, L. and P., Kuhn, Thea, D.M. (2002). Involvement of Men in Programs to Prevent Mother-to-child Transmission of HIV. Presentation at the XIVth International AIDS Conference, July 7–12, 2002, Barcelona. Abstract. SID A. (1998). Gender HIV/AIDS Transmission and Impacts: A Review of Issues and Evidence. Stockholm: Swedish SIDA. International Development Cooperation Agency. Simonsen, L., Kane, A., Lloyd, A.J., Zaffran, M. and Kane, M. (1999). “Unsafe Injections in the Developing World and Transmission of Bloodborne Pathogens: A Review”, WHO Bulletin, 77. Singhal, A. and R ogers, E.M. (1999). Entertainment–Education: A Communication Strategy for Social Change. Rogers, Mahway, NJ: Lawrence Erlbaum Associates. ———. (2003). Combating AIDS: Communication Strategies in Action. New Delhi: Sage. Siraprapasiri, T ., Rumakom, P ., Baker ., Pluempitiwiriyawej, S., Kitsuwvanaratana, S. T., P., Baker,, S., Kantayaporn, T T., and R attanamoonpanya, S. (2002). Improving the Life of PLHA through a Manual for Home and Community Rattanamoonpanya, Caregivers in Lampang, Northern Thailand. Presentation at the XIVth International AIDS Conference, July 7–12, 2002, Barcelona. Abstract. Smaglik, P ., Hawkins, R.P ., Pingree, S., Gustafson, D.H., Boberg, E.W P., R.P., E.W.. and Bricker Bricker,, E. (1998). “The Quality of Interactive Computer Use among HIV-Infected Individuals”, Journal of Health Communication, 3. Small, D.P D.P.. (2002). Developing Political Support among Legislators and Community Leaders for Reform of Drug Sentencing Laws that Contribute to HIV/AIDS in New York State’s Inmate Population. Presentation at the XIVth International AIDS Conference, July 7–12, 2002, Barcelona. Abstract. Smith, D. (2002). “The Theory Heard ’Round the World. Albert Badura’s Social Cognitive Theory is the Foundation of Television and Radio Shows that have Changed the Lives of Millions”, Monitor on Psychology, 33. Sood, S. (2002). Research Findings. Promoting HIV/AIDS Behavioral Change in Low Prevalence States of North India. Presentation of Midterm Results. Unpublished Report. Soul City City.. (2000). The Evaluation of Soul City 4: Methodology and Top-line Results. Paper Presented at the IIIrd International Entertainment–Education Conference for Social Change. September 19–21, Arnhem, the Netherlands.

328 Strategic Communication in the HIV/AIDS Epidemic Speizer ambashe, B.O egang, S.P Speizer,, I.S., T Tambashe, B.O.. and T Tegang, S.P.. (2001). “An Evaluation of the ‘Entre Nous Jeunes’ Peereducator Program for Adolescents in Cameroon”, Studies in Family Planning, 32. Stall, R.D., Hays, R.B., W aldo, C.R., Ekstrand, M. and McF arland, W Waldo, McFarland, W.. (2000). “The Gay ’90s: A Review of Research in the 1990s on Sexual Behavior and HIV Risk among Men Who have Sex with Men”, AIDS, 14. Stein, Z. (1996). “Editorial: Family Planning, Sexually Transmitted Diseases, and the Prevention of AIDS— Divided We Fail?”, American Journal of Public Health, 86. Stewart, M.J., Hart, G., Mann, K., Jackson, S., L angille, L. and R eidy Langille, Reidy eidy,, M. (2001). “Telephone Support Group Intervention for Persons with Hemophilia and HIV/AIDS and Family Caregivers”, International Journal of Nursing Studies, 38. Stoneburner Stoneburner,, R. and L ow-Beer ow-Beer,, D. (2002). Epidemiological Elements Associated with HIV Declines and Behavior Change in Uganda: Yet Another Look at the Evidence. Accessed at: www.synergyaids.com/Documents/2_R and_Stoneburner.pdf. Storey ., Heckert, K. and Karmacharya, D.M. (1999). “Impact of the Integrated Storey,, D., Boulay Boulay,, M., Karki, Y Y., Radio Communication Project in Nepal, 1994–1997”, Journal of Health Communication, 4. Stover Stover,, J. and Johnston, J. (1999). The Art of Policy Formulation: Experiences from Africa in Developing National HIV/AIDS Policies. Washington: The Policy Project, The Futures Group International. ehnstrom, J. and Schwartlander Stover Stover,, J., R Rehnstrom, Schwartlander,, B. (2000). Measuring the Level of Effort in the National and International Response to HIV/AIDS: The AIDS Program Effort Index (API). Glastonbury: The Futures Group International. Stover Stover,, J. and Begala, J. (2002). An Advocacy Application of the AIDS Impact Model (AIM) in Cambodia. Unpublished paper. Stover alker ., Salomon, J.A., Stanecki, K.A., Ghys, P .D., Grassly Stover,, J., W Walker alker,, N., Garnett, G.P G.P., P.D., Grassly,, N.C., Anderson, R.M. and Schwartlander Schwartlander,, B. (2002). “Can We Reverse the HIV/AIDS Pandemic with an Expanded Response?”, The Lancet, 360. Stratten, K. (2000). A Toll Free National AIDS Helpline: Experience from South Africa. Poster Presentation at the 13th International AIDS Conference, Durban, South Africa. Stratten, K. and Ainslie, R. (2003). Field Guide: Setting Up a Hotline. Baltimore, MD: Johns Hopkins Bloomberg School of Public Health/Center for Communication Programs. Sweat, M. and Denison, J.A. (1995). “Reducing HIV Incidence in Developing Countries with Structural and Environmental Interventions”, AIDS, 9. Synergy Synergy.. (2002). Putting on the Brakes: Preventing HIV Transmission along Truck Routes. A research-based field resource supported by the Synergy APDIME Toolkit. Accessed at: www.synergyaids.com. ———. (2003). Apdime Toolkit. Reource for HIV/AIDS Program Managers. Accessed at: www.synergyaids.com/ apdime/index.htm# on 7/22/03. Tchwenko, R.F R.F.. (2002). Satellite Radio Delivers Education to African Communities. Accessed at: www.ed-x.com/ newsdesc.asp?pType=1&NewsID=5820 on 2/28/2002. Teixeira, P P.. (2000). Universal Access to Antiretroviral Therapy: The Brazilian Experience. Second Meeting of the Contact Group on Accelerating Access to HIV/AIDS Related Care. 13. December, Rio de Janeiro. ———. (2002). The Brazilian Response to the HIV/AIDS Epidemic: Prevention, Treatment and Human Rights. Power Point Presentation, Ministry of Health, May. The A frican W omen’s Media Center African Women’s Center.. (n.d.). Reporting on HIV/AIDS in Africa. A Manual. The Hunger P roject. (2001). AIDS in Africa: A Crisis in Leadership, The Africa Prize for Leadership Address by Project. Joan Holmes, President of The Hunger Project, October 13, 2001, The Hilton Hotel, New York. The P olicy P roject. (2000a). HIV/AIDS Toolkit: Building Political Commitment. Washington, DC: The Futures Policy Project. Group International. ———. (2000b). HIV/AIDS Toolkit: AIDS Impact Model (AIM). Washington, DC: The Futures Group International. ———. (2000c). HIV/AIDS Toolkit: Measuring Political Commitment. Washington, DC: Futures Group International. Tichenor .J., Donohue, G.A. and Olien, C.V ichenor,, P P.J., C.V.. (1970). “Mass Media and the Differential Growth in Knowledge”, Public Opinion Quarterly, 34. Traore, R., V ondrasek, C., Brown, J. and Babalola, S. (2002). The Role of Quality Teams in Maintaining High Vondrasek, Demand for Quality FP Services. Poster at Global Health Council 2002 Annual Conference.

Bibliography 329 Tweedie, I. (2001). Ghana “Stop AIDS, Love Life” Phase 3: Compassion Strategy Document. Baltimore: Johns Hopkins University Center for Communication Programs. Tweedie, I., Boulay iagbey Boulay,, M., F Fiagbey iagbey,, E., Banful, A. and L okko, K. (2002). Ghana’s Stop AIDS, Love Life Program, Phase 1 Evaluation Report. Baltimore, MD: Johns Hopkins Bloomberg School of Public Health/Center for Communication Programs. wusabo-Asare, K. and Anarfi, J. (1998). Ghana Youth Reproductive Health Baseline Tweedie, I., W itte, K., A Awusabo-Asare, Witte, Survey Report. Baltimore, MD: Johns Hopkins Bloomberg School of Public Health/Center for Communication Programs. Tweedie, I., Glover Tetteh, J. (1997). Context and Content of Sex Refusal Skills and Condom Glover,, K. and NerquayeNerquaye-T Negotiation among Youth in Ghana. Baltimore: Johns Hopkins Bloomberg School of Public Health, Center for Communication Programs. United Nations. (1998). HIV/AIDS and Human Rights: International Guidelines. New York and Geneva: Second International Consultation on HIV/AIDS and Human Rights. ———. (2002). HIV/AIDS Awareness and Behavior. New York: Department of Economic and Social Affairs Population Division. UNAIDS. (1997a). The Business Response to HIV/AIDS: Innovation and Partnership. Geneva: UNAIDS. Accessed at: www.unaids.org/publications/ documents/sectors/workplace/businessresponse2001.pdf on 09/08/02. ———. (1997b). Prison and AIDS. Technical Update. ———. (1998a). Best Practice Summary Booklet: Family AIDS Education and Prevention through Imams Project. Geneva: UNAIDS. Accessed at: www.unaids.org/bestpractice/collection/subject/sector/aidsedu.html on 03/22/02. ———. (1998b). Gender and HIV/AIDS. Technical Update. ———. (1998c). AIDS and Men Who have Sex with Men. UNAIDS Point of View. Geneva. ———. (1999a). A Communications Framework for HIV/AIDS: A New Direction. A UNAIDS/Penn State Project. Best Practice—Key Material. Geneva. ———. (1999b). Sex and Youth: Contextual Factors Affecting Risk for HIV/AIDS: A Comparative Analysis of Multisite Studies in Developing Countries. Geneva: Joint UN Program on HIV/AIDS. ———. (1999c). Sexually Transmitted Diseases: Policies and Principles for Prevention and Care. Geneva: UNAIDS Best Practices Collection. ———. (1999d). Knowledge is Power: Voluntary HIV Counseling and Testing in Uganda. Geneva: UNAIDS. ———. (2000a). National AIDS Programmes: A Guide to Monitoring and Evaluation. Geneva: UNAIDS. ———. (2000b). Evaluation of the 100% Condom Programme in Thailand. Geneva: United Nations Joint Programme on HIV/AIDS in collaboration with AIDS Division, Ministry of Public Health, Thailand. ———. (2000c). Female Sex Workers HIV Prevention Projects: Lessons Learned from Papua New Guinea, India and Bangladesh. Case Study. Geneva: Best Practice Collection. ———. (2000d). Report on the Global HIV/AIDS Epidemic. Geneva: Joint United Nations Programme on HIV/ AIDS. ———. (2000e). Sexual Health of Males Who have Sex with Males in South Asia. Geneva: Best Practice Digest. Accessed at: www.unaids.org/bestpractice/digest/files/sexualhealth.html on 7/22/2002. ———. (2000f). Sex Education for Army Soldiers. Best Practice Digest. ———. (2000g). Technical Update: Voluntary Counseling and Testing (VCT). Geneva: UNAIDS. ———. (2000h). Tools for Evaluation HIV Voluntary Counseling and Testing. Geneva: UNAIDS. ———. (2001a). AIDS Epidemic Update. Geneva: Joint United Nations Programme on HIV/AIDS and World Health Organization. ———. (2001b). Fact Sheet: Drug Use and HIV/AIDS. United Nations Special Session on HIV/AIDS 25–27 June, New York. Accessed at: //www.unaids.org/fact_sheets/ungass/html/FSdruguse_en.htm. ———. (2001c). Technical Update: Population and Mobility and AIDS. Geneva: UNAIDS. ———. (2001d). Working with Men for HIV Prevention and Care. Best Practice Collection. ———. (2001e). HIV/AIDS and Security: Cooperation Framework between DPKO and UNAIDS. ———. (2002a). Report on the Global HIV/AIDS Epidemic. Geneva: Joint United Nations Programme on HIV/ AIDS. ———. (2002b). HIV/AIDS Stigma and Discrimination. World AIDS Campaign 2002–2003. A Conceptual Framework and Basis for Action. ———. (2002c). Sex Work and HIV/AIDS. Technical Update. Geneva: Best Practice Collection.

330 Strategic Communication in the HIV/AIDS Epidemic UNAIDS. (2002d). HIV Voluntary Counseling and Testing: A Gateway to Prevention and Care. Case Study. Best Practice Collection. ———. (2002e). AIDS Epidemic Update. Geneva: United Nations Joint Program on HIV/AIDS. ———. (2002f). The Faces, Voice and Skills behind the GIPA Workplace Model in South Africa. Best Practice Collection, written by Janine Simon-Meyer and Dan Odallo. ———. (2002g). Epidemiological Fact Sheets on HIV/AIDS and Sexually Transmitted Infections. Thailand, Update. ———. (2003). AIDS Epidemic Update. Geneva: United Nations Joint Program on HIV/AIDS. UNAIDS-GIP A. (2002). Report of the Technical Consultation on GIPA, February 28–March 1, 2002. Nairobi, UNAIDS-GIPA. Kenya. UNAIDS/Horizons. (2000). Peer Education and HIV/AIDS. Concepts, Uses and Challenges. UNAIDS/P anos. (2001). Young Men and HIV: Culture, Poverty and Sexual Risk. Geneva: UNAIDS, and London: UNAIDS/Panos. Panos Institute. UNAIDS, UNICEF and USAID. (2002). Children on the Brink 2002. A Joint Report on Orphan Estimates and Program Strategies. UNAIDS/WHO UNAIDS/WHO.. (2000). Consultation on STD Interventions for Preventing HIV: What is the Evidence? Geneva: UNAIDS. Underwood, C., Hachonda, H., Serlemitsos, E. and Bharath, U. (2001). Impact of the HEART Campaign: Findings from the Youth Surveys 1999 and 2000. Lusaka, Zambia: The Zambia Integrated Health Programme and The Johns Hopkins Center for Communication Programs. UN/EC A. (2001). The African Development Forum ’99. Post-ADF Summit. Information and Communication UN/ECA. Technology for Health Sector. United Nations Economic and Social Council, Economic Commission for Africa. Second Meeting of the Committee on Development Information, September 4–7, 2001, Addis Ababa, Ethiopia. Accessed at: www.un.org/depts/eca/adf/pforum.htm. UNFP A. (2000). Gender and HIV/AIDS: Leadership Roles in Social Mobilization. Report of the UNFPA-Organized UNFPA. Breakout Panel African Development Forum, Addis Ababa, Ethiopia, December 3–7, 2000. UNHCR. (2001). Refugees and AIDS. ———. (n.d.). HIV/AIDS Education for Refugee Youth: The Window of Hope. UNICEF UNICEF.. (1997). Sara Saves Her Friend. Mathew Miller Longman, Cape Town. ———. (1998). Research Process in the Sara Communication Initiative: A Report and Resource Book. Nairobi: UNICEF-ESARO. ———. (2002a). In Malawi: Fighting HIV/AIDS in the Classroom. State of the World’s Children 2002. New York: UNICEF. ———. (2002b). Better Practices in Communication for PMTCT. A Global Survey from 2000–2002. New York: UNICEF. UNICEF/MML. (2003). Some Things can Change: A Resource Book for Working with Youth and Communities on Female Genital Cutting. Nairobi: Eastern and Southern Africa Office. Published by Maskew Miller Longman, Cape Town. UNICEF -UNAIDSWHO UNICEF-UNAIDS-UNAIDS-WHO WHO.. (2000). Local Monitoring and Evaluation of the Integrated Prevention of Motherto-Child HIV Transmission in Low-Income Countries. ———. (2001). Young People and HIV/AIDS: Opportunity in Crisis. New York and Geneva. UNIFEM. (2001). Women, Gender and HIV/AIDS in East and Southeast Asia. USAID. (2000). Voluntary HIV/AIDS Counseling and Testing: Many Africans Do Want to Know. Press Release. Accessed at: www.usaid.gov/press/releases/2000/fs000712_2.html on 2/22/02. ———. (2001). Guinean National HIV Seroprevalence Survey. Accessed at: www.usaid.gov/gn/health/news/ 021011_hivsurvey/abstract.htm, Family Health International, and Stat-View International, Conakry. ———. (2002a). HIV/AIDS in Senegal: A USAID Brief. Washington: The Synergy Project. ———. (2002b). “Tips for Developing Life Skills Curricula for HIV Prevention among African Youth: A Synthesis of Lessons Learned”, Technical Paper No. 115, SD Publication Series, Office of Sustainable Development. Washington: United States Agency for International Development. ———. (2002c). HIV/AIDS in Brazil and USAID Involvement. Washington, DC: United States Agency for International Development. ———. (2002d). Male Circumcision: Current Epidemiological and Field Evidence, Program and Policy Implications for HIV Prevention and Reproductive Health. Conference Report. Washington: USAID Office of HIV/AIDS.

Bibliography 331 US Census Bureau. (2001). HIV/AIDS Surveillance Database. Population Division, International Program Center. Valente, T T.. (2002). Evaluating Health Promotion Programs. New York: Oxford University Press. Van de V en, P ., Kippax, S., Knox, S., P restage, G. and Crawford, J. (1999). “HIV Treatment Optimism and Ven, P., Prestage, Sexual Behavior among Gay Men in Sydney and Melbourne”, AIDS, 13. Van de V en, P ., P restage, G., Crawford, J., Grlich, A. and Kippax, S. (2000). “Sexual Risk Behaviour Increase Ven, P., Prestage, is Associated with HIV Optimism among HIV-negative and HIV-positive Men in Sydney Over a Four-year Period to February 2000 [research letter]”, AIDS, 14. Van Dyk, A.C. (2002). Voluntary Counseling and Testing in South Africa: Challenges and Opportunities. Presentation at the XIVth International AIDS Conference, July 7–12, 2002, Barcelona. Abstract. Van R ossem, R., Meekers, D. and Akinyemi, Z. (2001). “Consistent Condom Use with Different Types of Rossem, Partners: Evidence from Two Nigerian Surveys”, AIDS Educ Prev, 13. Vaughan, P .W ., R ogers, E.M., Singhal, A. and Swalehe, R.M. (2000). “Entertainment–Education and HIV/ P.W .W., Rogers, AIDS Prevention: A Field Experiment in Tanzania”, Journal of Health Communication, 5. Venkataraman, R., V enkataraman, I., Mishra, M. and Sathiamoorthy Venkataraman, Sathiamoorthy,, K. (1996). Using Docu-drama Films on Life Stories of PLHAs as a Media Strategy to Change Attitudes. Presented at the International Conference on AIDS. July 7–12, 1996, Vancouver, Canada. Abstract no. Mo.D.254. Voluntary HIV -1 Counseling and T esting Efficacy Study Group. (2000). “Efficacy of Voluntary HIV-1 HIV-1 Testing Counseling and Testing in Individuals and Couples in Kenya, Tanzania, and Trinidad: A Randomized Trial”, The Lancet, 356. Vuong, T .H., Pham, H.T ., Chu, A.Q., Le, Y .N., Dang, K.V T.H., H.T., Y.N., K.V.. and Nguyen, K.T K.T.. (2002). Peer-based Harm Reduction Intervention for HIV Prevention in Injection Drug Users in Northern Vietnam. Presentation at the XIV International AIDS Conference, July 7–12, 2002, Barcelona. Abstract. Walkowiak, H. and Gabra, M. (2002). Commodity Management in VCT Programs: A Planning Guide. Boston: Management Sciences for Health (MSM). Watstein, S. and L aurich, R. (1991). AIDS and Women: A Source Book. Phoenix, Arizona: Oryx Press. Laurich, Weinhardt, L., Carey Carey,, M., Johnson, B. and Bickham, N. (1999). “Effects of HIV Counseling and Testing on Sexual Risk Behavior: A Meta Analytical Review of Published Research 1985–1997”, American Journal of Public Health, 89. Weiss, H.A. and Quigley Quigley,, M.A. (2000). “Male Circumcision and Risk of HIV in Sub-Saharan Africa: A Systematic Review and Meta-analysis”, AIDS, 14. Weller eller,, S. and Davis, K. (2002). Condom Effectiveness in Reducing Heterosexual HIV Transmission. Cochrane Database Syst Rev 2002; 1:CD003255. WHO WHO.. (2000a). Violence against Women and HIV/AIDS: Setting the Research Agenda. Meeting Report, Gender and Women’s Health. Geneva: World Health Organization. ———. (2000b). Reproductive Health during Conflict and Displacement: A Guide for Programme Planners. Geneva: World Health Organization. ———. (2000c). Use of Nevirapine to Reduce Mother-to-Child Transmission of HIV: WHO Review of Reported Drug Resistance. Geneva: World Health Organization. ———. (2001). Broadening the Horizon: Balancing Protection and Risk for Adolescents. Geneva: Department of Child and Adolescent Health and Development, Family and Community Health, World Health Organization. ———. (2003). Safety of Injections. Fact Sheet Bo. 231, Revised April 2002. Geneva: World Health Organization. (www.who.int/inf-fs/en/fact231.html). WHO/UNAIDS. (2001). Technical Consultation on Voluntary HIV Counseling and Testing: Models for Implementation and Strategies for Scaling up of VCT Services. Harare, Zimbabwe, July 3–6, 2001. W ilcox, D. (1994). The Guide to Effective Participation. Accessed at: www.partnerships.org.uk/guide/index.htm on 6/22/2003. W imberley imberley,, K. (1994). Adolescent Girls and HIV Prevention/AIDS Education in Ankole, Southwestern Uganda. Copenhagen: University of Copenhagen, Institute of Anthropology. W itte, K. (1998). Theory based Interventions and Evaluations of Outreach Efforts. Seattle, Wa: National Network of Libraries of Medicine/Pacific Northwest Region. Accessed at: www.nnlm.nlm.nih.gov/pnr/eval/witte.html. Wojcicki, J.M. and Malala, J. (2001). “Condom Use, Power and HIV/AIDS Risk: Sex-workers Bargain for Survival”, Social Science and Medicine, 53.

332 Strategic Communication in the HIV/AIDS Epidemic Wolf awfik, L.A. and Bond, K.C. (2000). “Peer Promotion Programs and Social Networks in Ghana: olf,, C., T Tawfik, Methods for Monitoring and Evaluating AIDS Prevention and Reproductive Health Programs among Adolescents and Young Adults”, Journal of Health Communication, 5. Women’s Commission for R efugee W omen and Children. (2000). “Rebuilding Rwanda: A Struggle Men Refugee Women Cannot Do Alone”, Delegation Report. NY. World Association of Girl Guides and Girl Scouts. (n.d.). Badge Curriculum: Health of Adolescent Refugees Project. London: World Association of Girl Guides and Girl Scouts, Family Health International, The United Nations Population Fund. World Bank. (1999). “Uganda: The Sexually Transmitted Infections Project”, Findings (World Bank Publication No. 127). ———. (2001). Thailand’s Response to AIDS: Building on Success, Confronting the Future. Washington, DC: Thailand Social Monitor V. ———. (2002). HIV/AIDS in South Asia: A Human and Development Challenge. Regional Updates. India: South Asia Region (SAR). World Economic F orum. (2002). Global Health Initiative: Private Sector Intervention. Case Example Daimler Forum. Chrysler. World V ision. (2001). Toolkit for HIV Prevention among Mobile Populations in the Greater Mekong Subregion. World Vision. Vision, Australia and The Macfarlane Burnet Institute. Bangkok: Asian Development Bank and UNDP. YAO/JHU/CCP AO/JHU/CCP.. (2002). Zambia Football Camp. Unpublished Report provided by YAO for this publication. YOUandAIDS. (2002). Information Technology, Digital Divide, and HIV/AIDS. Accessed at: www.youandaids.org/ IT/Default.asp on 4/4/02. ZIHPCOMM. (2000). Our Neighborhood and Community Health with Sister Evelina. Neighborhood Health Committee (NHC) Distance Learning Show. Concept Paper.

Index Abstinence, 87–90, 95–97, 99, 100, 136, 286, 299; “ABCs” (Abstinence, Being faithful, and Condom use), 28, 44, 285, 288; ABC programing, audience and actors, 93–94; Abstaining from sex, 129; abstaining, 111; Abstinence and monogamy, 296; abstinence, focus on, 97; approach, 61, 92, 128, 285, 294; Challenges and Lessons Learned, 97–98; Formative Research, 92–93; for safer sexual practices, 55; messages, 118; messaging, caution in the use of, 97; of prevention, 94, 231; promote among MSM, 153; promotion, effectiveness, 286; Rationale, of Safer Sexual Practices, 88–92; strategies, 81, 98 abortion and post abortion counseling, 116 Academy for Educational Development (AED), 269 acceptance and self-esteem, 112 Accra, 114 “Action Cycle”, 80; “Action Media”, 83 “active” participant, 154–155 “Alejandra”, 37 “Angel”, 37, 153 ability to act, 44 Action groups, 49 ad hoc interventions, 46 adolescents, 52, 119, 121; “Adolescence”, means, 110; “Adolescent Reproductive Health Working Group”, 121; Adolescent audience, 286; Adolescentfriendly health services, models,

116; Adolescents’ problems, 121 adult prevalence rate, 63 Advocacy, 27, 63, 72–73, 119, 273; activities, 76, 109, 132; Advocacy (State or District Level), 51; Advocacy and BCC, 50; advocacy efforts, 48; Advocacy groups, probreastfeeding, 215; Advocacy, dictionary definition, in international development work, 56; advocacy, promotion of the, 28; advocate, 36; analysis and planning, 58; capacity, 64; communication, 127; efforts, 62; for behavior change and social responsibility, 131; for community based projects, 79; interventions, audiences and strategy, 74; planning, 57; policy development, 176–177; process, 86; program, answers, 57; program, 50, 64; skills, 64; social mobilization, 72; specific strategies, 59; Strategic Approaches, 58–61; strategy, 63; Strengthen Political Commitment, 57; Strengthen Political Commitment, Audience and Actors, 57–58 aesthetic appeal, 35 affecting interventions, 49 affective arousal, 43 Africa, 42, 74, 89, 107, 111, 124, 135, 195, 277, 279, 290, 297; African, 46, 291; African countries, 90; “African sexuality”, 101; Africa, Francophone, 108; Africare, 116; African continent, 117; African Networks

for Health Research and Development (AFRO-NETS), 279 AIDS, Acquired Immunodefeciency Syndrome, resulting condition of, (see HIV), 23, 24, 26, 29, 38, 42, 44, 67, 125, 210; 283; “AIDS belt of Africa”, 292; “AIDS kills”, 102; “AIDS orphans”, 235; AIDS, a disease of, 288; AIDS care, rapid changes, 218; AIDS Conference, 14th International, 298; AIDS control program, 52, 92; AIDS, fight against, 56, 129, 254; AIDS Impact Model (AIM), 59, 63, AIM booklet, 64; AIDS Information Center, 200; AIDS information Centre, 60; AIDS logo, 270; AIDS prevention efforts, 56; AIDS Program Effort index, 62; AIDS risk reduced model, 41; AIDS Support Organization, The (TASO), 105; AIDS, mitigate effects of, 148; AIDS-affected youth, 120; annual World AIDS DAY, 26; Anti-AIDS club, 116; awareness of HIV/AIDS, 41; Causes of AIDS, poverty, 60; AIDS commission, 67 alcohol and drugs, 26, 43, 97 All India Radio, 249 Ally, 50; Allies (Event or Functionspecific), 51 Amaro, H., 42 anal sex, 149, 153; penetrative, 155, 292 analysis, 31–32, 48 ANC services, 129, 213, 217; service delivery, 214

334 Strategic Communication in the HIV/AIDS Epidemic Andhra Pradesh, a southern Indian state, 56 annual World AIDS DAY, 26 antenatal care services, 116 anthropology, 30 Anti-retroviral therapy (ART), 25– 26, 29, 40, 42, 60, 186, 206, 218–220, 225, 228, 294, 295; Advocacy, law policies, guidelines for, 228; ART program, 185, 210, 221; ART, adherence, 84; ART, audiences, 220; Audience and Strategy, Case Study, Brazil, 226; behavior challenge, 295; benefits expected, 220; Case Study, Brazil, 226–228 (see also Case Study, Brazil); Challenges and Lessons Learned, 224; community mobilization, 221; Formative R esearch, 220; implemented, 221; involves, 220; Key issues to communicate, 223; results of case study, 227; media, 221; Rationale, 217; reduces viral load, 224; Risk and behavior, 295–296; role of communication, 217– 228; social services, 224; Strategic Approaches, 221–223 ARV drugs, 5, 156, 206, 215, 218, 220; drug regimens, 227; effective use, 219; ARV drug treatment, 62; behavior response, 295; distribution, 299 ARH design workshop, 52 Armed services, 140; Armed forces, 176 Asia, 123, 158, 162; Asian, 24, 46 Atlanta, 148 Australia, 148, 156, 296 attitudes, 35, 45, 109; attitudinal and behavior change, 44; Attitudes and behaviors, 83; attitudes and actions, 289 Audience, primary/secondary/ tertiary, 49 Avert, 51, 141 awareness, 26; of condoms, 96 being faithful to one’s partner or reducing the number of one’s

sexual partners, 88, 89, 90, 286, 299 “belonging”, 155 “best practices”, 85 “branding”, 68; “branded”, 143; “branding” approach, 189 “breaking the silence”, PLHA, 61, 62 “bridge” 158 “buddy system”, 177 “buy in”, 128 bacterial infections, 290 Bakadi, G., 88 Balanced approach, 88 Bandura, A., 242 Bangladesh Center for Communication Programs, 121 Bangladesh, 52, 115, 121, 147, 149, 293 Bangladeshi sex workers, 145 bar girls, 51 Barcelona, 298 Barnett, B., 182 baseline data, 33 BBC World Service Trust, 249; BBCWST campaign, 251 behavior change, 26, 27, 30, 33– 35, 40, 42, 43, 44, 54, 56; behavior and social change, 28, 41, 45; social issues, 62; interventions, 31, 42; theory, 41, 42; accelerate, 286; promote, 159; behavior community, individual, 46; behavior development, 45; Behavior dominating, 125; behavior modeling, 189; Behavioral challenges, 295; Behavioral development of children and adolescents, 72; Behavioral disinhibition, 155, 295, 296; “treatment optimism”, 296; behavioral outcomes, 36, 46; behavioral responses to risk situation, 133 Behavior Change Communication (BCC), 39, 48, 50, 51, 55, 66, 69, 72, 73, 76, 96, 158; Strategy, 34; BCC assessments, 34; BCC strategy & M&E plan, 34, 76; BCC, program of, 72, 74, 117 beliefs, 45

Berengere De Negri et al., 83 best Practices, 156 Beyond Awareness campaign, 107, 109, 270 Bhoruka Public Welfare Trust, The (BPWT), 173, 174 Bilateral and International Agencies, those who, 28 billboards, 30, 109 biological co-factors, 299 biological risk factors, 291–293 birth control, 96, 129 bisexual activity, 93 bleach kits, 160 Bloem, M., 148 blood plasma, 23 blood supplies, 24 blood supply, Safety of, 91 body mapping, 80 Botswana, 23, 25, 89, 175 Boy or Girl Scouts or Guides, 116 Brazil, 24, 25, 98, 218, 219, 221, 224, 225, 226, 278 Brazilian PLHA, 25 Brazilian women, 129 Britain, 224 brochures, 109 brothels, 24, 39, 43, 90, 294; brothel-based fsws, 51; brothelbased survey, 147; brothel owners, 139, 142 Brown, L., et al., 288, 289 Buddhism, 286; Buddhist monks, 231 Bukoba district, Tanzania, Africa, 90 Buprenorphine, 158, 164 Burkina Faso, 80, 105, 107, 108, 188 condoms, 24, 34, 41, 88, 89, 90, 96, 97, 100, 125, 160, 164, 168, 169, 173, 250, 257, 265, 286, 299; “natural condom”, 293; Condom advertisement, controversial, 95; availability, 56; Condom campaign, 56; Condom distribution, 79, 83, 88; Condom effectiveness, 145; Condom manufacturers, 51; condom messages, 39; Condom negotiation, 97, skill, 144;

Index 335 Condom program, 225; Condom promotion, 88, 92, 98, 166, 286, 294; Condom sales and distribution, 91; Condom sales figures, 88; Condom social marketing, 88, 226; Condom supplies, 62; Condoms, effectiveness, 89; Condoms, lack of demand, 89; Condoms, low cost, 88; Condoms, promoted, 98; Condoms, protection of HIV/AIDS, 96; Condoms, provision, 138, 143, 160, 179; Condoms, tools, 144; Condoms, use to prevent HIV infection or pregnancy, 89; power, 112; protective barrier, 154; rarely use, 111; reason of nonuse, 112; condom use, 33, 41, 87, 89, 94, 96, 97, 127, 129, 136, 138, 159, 166, 197, 293, 294, 296; access to, 124, 143, 178; audience, 96; brothels, 142; by male sex workers, 157; campaign, 99; Condom, positioning, 99; condom, promotion of, 97, 117; Condom, social acceptability, 97, 98; Condoms, central role, 92; consistent use by clients, 143; contraceptions, 116; correct use, 142, 144, 154; demonstrate, 173; encouraged, 95; female condom, 145; inconsistent, 99; increase, 147; levels of violence influence, 145; low use, 89; not discouraged, 92; safe by using, 136; stigma, 97; value, 147 “capability strengthening”, 46 “captive audience”, 223 “chat room”, 40 “cool”, 118 “correct knowledge”, 106 “Culture” social consequences, 42 Center for AIDS Development, R esearch and Evaluation (CADRE), 234 Cambodia (see also Case Study), 56, 63, 105, 168, 175, 282; Cambodian seafarers, 169 Cameroon, 89, 188 CAIP, Audience and Strategy, lessons learned, project’s aim; results, 234

Canada, 129 Capacity building, 69, 79; social mobilization, 69; Capacitybuilding, mobile groups, 171; capacity strengthening, 46, 83 Cape Town, 273 Carletonville, The project, 169 Carnegie R. and Weisen, R.B., 115 care and destigmatization, 51; care and support, 24, 32, 46, 53; Care and support activities, 25; for/of PLHA, 28, 102, 251; Care/support-PLHA, OVC, 47; care and support of orphans, 29; Care and support referrals, 232; Care and support resources, 62; Care and support services, 257; care and support, 24, 32, 46, 53; Care treatment and support, 26, 27 Caring Understanding Partners Program, The (CUP), 129 Carribbean, 23 cartoon fomat, 152 Case Study, Adolescent Reproductive Health in Bangladesh, 121–122; Application of AIDS Impact Model, Cambodia, 63– 64; ART, Brazil, 225–228; BBC Entertainment–Education Program, India, 248–252; Brief Examples of Disclosure and Compassion, Africa, 107– 109; The Commuter AIDS Information Project, South Africa, 233–235; The Chikomeni Youth Camp, Boys in Zambia, 135–137; Electronics AIDS Network in Southeast Asia, 282–284; Expansion of PMTCT, Thailand, 216–217; Health of Adolescent Refugees Project (HARP), 180–182; IDUs, New Delhi, India, 163– 165; The Lesedi Project, South African Miners, 171–172; Mobilizing Traditional Networks, Guinea, 85–86; Naz Foundation Trust, India, 156– 157; New Start, Zimbabwe, 204–206; OVC, Malawi, 235; Peer Education among Factory Workers, Thailand, 259–261;

Peer Educators at Mumias Sugar Company, Kenya, 262– 263; Sara Communication Initiative, 115; Sara Role Model for African Girls, 133–135; South African AIDS Hotline, 268–271; SHAKTI, Bangladesh, 147–148; Stop AIDS, Love Life, Ghana, 73–76; Tea Parlors for Truckers, India, 172–174; Zambia, Communicating Safer Sex, 99–101 casual sex, 98; casual and unsafe sex, reducing, 116; casual partners, 154 Catholic Church, 90; Catholic Institute for International Relations, The (CIIR), 126 casual transmission, 106 CD-4 count, 220, 226 CDC, 53 CD-ROM, information, 272 cells, T lymphocyte, 218 Center for Communication Programs, 31 Central American, 34; Central and South America, 149 Central Asia, 23 Cervical screenings, 143 Chalak Malak Sanstha Organization, 51 Chat Chowk, 249, 250 changes in knowledge, 33 changing behavior, 29 channel and media selection, 49 “chat” on-line, 152 Chiang Mai province, Thailand, 216 Chikomeni rural Health Centre (RHC), 135, 137 Chikomeni Youth Camp, Goal and Objectives, 135 “child”, defined, 110; child abuse, 39; child care organizations, 51; children and adolescents, 45; Child-bearers and nurturers, 123 Chile, 175 China, 23, 24, 27, 158 Cipla, 218 circumcised men, 292 Christian Church, 286 church groups, 38

336 Strategic Communication in the HIV/AIDS Epidemic Civil social organizations, 67 “clean” girl, 124 Clean needles, 257 clients, 51, 89; Client–provider communication, 187; Clientprovider interaction, 188; Clients, mobile, 140; ClientCentered Programs, 38; clientcentered services, 38; Client satisfaction, 36 Clinics, 116; clinic-based, 40; clinic facilities, 38; clinic personnel, 38; Clinical trials, 25; clinic visits, 36; Clinical Officer, 137; Clinical setting, 143; Clinical, social and educational services, 164; Clinics for STD treatment, 168 coalition building, 88 Code of practices, Code of Conduct, 176; Code on marketing, breast milk substitutes, 215 coercion, 145; coercive sex, 124 cognitive approaches, 41; cognitive decision, 43 Coital act, 297 Collaborative political commitment, 63 Collective action, 77; collective efficacy, 44, 49 combat HIV/AIDS, 52; Emerging challenges in, 29 Comic book, 260; Marcelline and Jojo, 108 commercial marketing, 37 Commercial sex contacts, 23 commercial sex worker (CSW), 39, 145, 165, 248 commercial sex, 259; avoiding, 90; Commercial and noncommercial sex, 154 commercial sex facilities, 56 commitment from donors, 71 Common Identity, 78 communication, 26, 27, 36, 40; communicate gender equity, 130; communication activities, 30; communication analysis, 46, 48, 49; communication and ART, 215; Communication and Training Needs Assessment,

49; Communication approaches, 49, 167; communication channel, 38, 39, 238; Communication channels and methods, 115; Communication Channels and tools of action, 81; communication effort, 37; communication for social change, 43; Communication interventions, 40, 43, 47, 104, 143; communication materials, 35, 38, 49; communication objectives, 49; Communication planning, 45, 69; exercise, 58; Communication Planning, Maharashtra, 69; Communication products, 31, 34, 38; communication program, 28, 33, 38, 40, 41, 44, 50, 96, 116, 201, 296; reformulate, 298; Communication specialists, 27, 45; Communication strategies, plan and design, 83; communication supports, 38; Communication to reduce stigma, 101–109; communication vehicles, 38; Communication, breastfeeding, 212; Communication, national, interpersonal, 47; Communications Technology, 47; communicators and communication tools, 38, 133; Communication tools, SCI, 135; pivot role in HIV/AIDS services, 183 communicators, 28, 31, 36, 52, 124, 290, 291; key role, 299 “communities”, definition of, 53; “community” definition of, 78; communities, 43, 46, 101; Community Action Cycle, 80, 80; community activities, 39; Community advocates, 225; community-based interventions, 28; community capacity, 84; community care interventions, 228; community consultation, 159; Community Control, 79; Community Demand, 85; community development experts, 66; community

dialogue, 77; community dynamics, 49; community empowerment, 44; community group, 83; Community Health Session, 137; community initiatives, 53; community involvement, 221; Community– Level Activity, 53; Community level processes, 81; community level, 48, 49, 76; community mapping, 80; community mobile video shows, 137; community norms, 77; harmful, 85; community outreach, 78, 200, 228; community participation, 68; community processes, facilitate, 79; Community Radio, 82; community rallies, 30; community responsibility, 136; community settings, 41; stigmatization, 187; support programs, 63, 224 community mobilization, 28, 37, 38, 46, 53, 66, 72, 78, 79, 188; “community mobilization”, 65; definition, 76; Challenges and Lessons Learned, 84–85; community mobilization, case study Audience and Approach, 86; Community mobilization methods, 77; Community mobilization programs, 205; Community mobilizers and facilitators, 84 Community-based Organizations (CBOs), CBOs, 65, 78, 81, 83, 84, 174, 189, 214, 233, 236; Community and faithbased organizations, key barriers, 108; Communitybased groups, 163; Community based program, “community Preparedness”, 217; Community-based approaches, 76, 129; Community-based communication programs, 83, 116; community-based distributors (CBDs), 137; Community-based entertainment, 113; Community-based Entertainment–Education (E–E), 82; community-based

Index 337 events, 30; Community-based HIV, 80; community-based programs, 38, 85, 235; community-based response, 58, 77; Community-based tools, additional, 83; Communitybased, peer group approach, 128 community-level activities, 31, 38; community-level gatekeepers, 35; community-level initiatives, 53 Community-level interventions, 96; Community-Level Media and Activities, 81 Community role models, 231 Compassion and destigmatizing PLHA, 75; Compassion, hope and support, 109 complementary strategies, broadbased, 72 Complex Challenge, The, 23–24 complex health behaviors, 41; Complexity of behavior, 62 Compliance, behavioral challenge, 295 comprehension, 37, Comprehensive Approaches, 285–288 computers and Internet, 39; Computer Assisted instruction (CAI), 272; Computer-based Training (CBT), 272, 276, 277; CBT materials, 281; CBT, used primarily, 279; CBT and CAI programs, 272; CT-based AIDS education, workplace campaign, 277; Computer-based health information/support system (CHES S), 278; Computer Counseling, 114 Comutanet, 234 Committee to Democratize Information Technology (CDI), 278 concept of analysis, 46 Concerted action, 57 concerted advocacy, 51 Conference, 14th International AIDS Barcelona, 224 Conflicts and Emergency Situation, HIV/AIDS Rationale, 174–176 Consultation, 79

Contagion, fears of, 102 Continuum of Care, fig 5-1, 183; Continuum of care in Action, India, 185 contextual or environmental factors involved in HIV/AIDS, 77 contraception, 96; contraceptive methods, 116, 143; contraceptive pills, 88; contraceptive purposes, 89; contraceptive use, increase, 118 Contradictory and counterproductive messages, 97 Control committees, 26 Control program, 65, 67, 73 Coordination of Action Research on AIDS and Mobility (CARAM), migrants, 170 co-ordinated social movements, 46 coordination mechanisms, 67 Coordinators, 71 COPE project, Malawi, Challenges and lessons learned, COPE, project results, 236 coping mechanisms, 42 “core transmitters”, 145 cost alternative, 40 cost-effective, 35, 39, 88; costeffectiveness, 40; costs and benefits, 43; Cost-effectiveness analysis, 200 Cote d’ ivoire, 85 Counsel, 128 counseling, 34, 39, 49, 51, 160, 196; counseling, IPC/C, 30; counseling and care, 42; Counseling and Interpersonal Communication, 220; Counseling and medical care, 105; Counseling clients, 216; counseling on prevention, 40; Counseling skills, 105; Counseling training, 228 counselors, 51, 120; “burnout”, 203 Creating Awareness, 24 Cue cards, 59 cultural, 43, 132; beliefs, harmful, 132; cultural acceptability, 35, 38; cultural acceptability, 38; cultural and economic factors, 49; cultural and linguistic barriers, 166; cultural knowledge

and traditions, 212; cultural mediators, 169; cultural norms, 26, 42, 90, 99; cultural practices, 299; cultural values and traditional beliefs, 140, 291; culturally acceptable, interaction on HIV and AIDS, 81; culture and social organization, 288 data collection, 31 Daimler’s Chrysler’s programs, 223; Daimler Chrysler in South Africa (DCSA), 277; DCSA Aids-workplace, campaign focus, 277 dealing with stigma, 60 De Cock, K.M., et al., 297 De Coito, T., et al., 172 decision making, 35, 44, 50; Decision-making skills, 136 decline in HIV, 55 decreases in sexual relations, 166 Delivery of Improved Services for Health (DISH), 115; Project, 191, 202; Delivery system, sustainable, 245; DISH II project, purpose, 248 Demand driven approach, 122; Demand side, HIV/AIDS services, 183 Designing communication and training interventions, 105; designing communication interventions, 163; design and execution, 31; designers and evaluators, 36; designing an intervention, 139; design and implementation, 30, 31, 34, 35, 36, 38, 104, 118, 148; designing, implementing and evaluating programs, 53; design of material and programs, 299; design process, 31; design and production, 38; designing programs, 45; design of programing and implementation of activities, 78 desired change, 35; desire for emotional fulfillment, 97 destigmatize, PLHA, 60; destigmatization, 109

338 Strategic Communication in the HIV/AIDS Epidemic development purposes, 37; development programs, 47, 83, multisectoral, 47; Development and Testing, 48, 49; Development and application of AIM, 63; Development of National Coordination Body for Communication, 67; Development, Vol. 1(2) Trainer’s Manual (Participant’s Handbook), for participatory, 83 developing countries, 25, 26, 28, 42, 43, 69, 88, 106, 115, 149, 219, 225, 271, 285, 295; developing and implementing programs, 120; developing world, 96, 110 devolution of power and responsibility, 71 DFID supported program, 280 Dhaka, 149 dialogue, 31; dialogue and debate, 255; dialogue between parents and children, 226 diagnosis and treatment services, 130; diagnosis and treatment STIs and VCT, benefits, 145 digital communication, 29; “digital divide”, 271, 280; digital radio, 273; digital tools, 278 diffusion of innovations, 42 “dipping”, 292 direct participation, 38; direct interaction and participation, 40 “discordant couples”, 203 discrimination, 101, 203; discrimination, acts of, 102; discriminating against PLHA, 76; disease burden, 47; disease of “gay”, 152; disease of IDUs, 152; dissemination, 35, 49, 50, 85; dissemination plan, 64; disseminated stories, 133 District advocacy plans, 58; District Development Committee, 86; District Health Services, 191; District and Community AIDS Coordinating Committees, 236 Distribution and Marketing Condoms, 142

Dominican Republic, 90, 126, 142 donors, 51, 84, 203; Donor organization, 245 Doordarshan, 249 DramAidE, 234 Dramas, 52 Drop-in centers, FSW, 147; Dropin centers, MSM groups, 153 Drug Access Initiative, 219; drug injections, 23; drug use, 101; drug users, 170; drug use prevention programs, 164; drug treatment, New Delhi, 164 “Dry” Sex, 292 Dual protection, refers to, 96; Dual-method use, involves, 96 Dying, 102 Eastern Europe, 23, 158 Eastern and Southern Africa, 122; Eastern and Southern African countries, 133; Eastern Cape of South Africa, 279 earlier infection in females, reason, 123 “Eating with Hope”, 107 economic, 31, 45; economic development, 124; resources, 42; social factors, 120 Ecuador, 105, 126 educational methodology, 126; education and reflective games, 83; educational programs, 180; education strategy, 147; education systems, 45 effective communication, 24; effectiveness, 34; effective advocacy, 62; effective counseling, 44; effective means of protection, 41; Effective HIV/ AIDS advocacy program, 57 Egypt, 180, 181 Electronic media, 223 eliminate stigma and discrimination, 63 El Salvador, 126 El Significado de Ser Hombre, workbook, 126 e-mail discussion, 278 emergency situations, 174 (see also Conflicts and Emergency Situation)

emergency contraception, 37 emotional response, 37; emotioncharged drama, 37; emotional and social skills, 44 empathy, 44, 187 empirical data, 31; empiricallysupported behavior theories, 42 Employers, mobile groups, 169 Empowering Communities: Participatory Techniques for Community-Based Program, 83 encourage, countries governments, 286 endogenous responses, 92 enhance community response to HIV/AIDS, 75 ensuring Community Participation, 71 Entertainment–Education (E–E), 29, 113, 238, 272; Entertainment–Education, definition, 239; costs, 245; community level with Mass media, 274; E– E, “edu-tainment”, 239; E–E, “info-tainment”, 239; Audiences, 240; Entertainment– Education (E–E) Approach, 37; BBC campaign objectives, 249; challenges and lessons learned, 251; communitybased; 247; E–E Direction and Motivation, 240; Drama, 240; Enter–Educate, 239; ethical dilemmas, 246–247; Entertainment–education, format, 96; formative Research, 239– 240; Entertainment–education, HIV/AIDS Prevention, 238–252; information on HIV transmission, 240; Entertainment media, effects, 245; media strategy, 249; powerful reasons, 239; E–E programs, 240; E–E, Rationale, 238– 239; realistic models, 241; regional materials, 245; regional popular music, 246; Entertainment–Education, refugee focus, 178; results of BBC WST program, 251; social environment, 242; Strength of Approach, 240; strengthening

Index 339 Local Capacity, 248; E–E programing, 53; E–E strategies, 82 epidemiology, 34; epidemiological, 34, 46; analyses, 25, epidemiological factors, 62 ethical, 288; ethics of AIDS reporting, 59 Ethiopia, 56, 289 eunuchs, 154 Eurasia, 158 Europe, 42, 149, 156, 158, 169, 292, 297 Evaluation and Replanning, 48, 50 evaluator(s), 36, 72 evidence-based decision making, 35 existing levels of knowledge, 35 Expertise of communicators, 67 Extramarital sex, 124 Face-to-face interventions, 118; Face-to-face-dialogue, 234 facilitate behavior change, 69; Facilitation manuals, 69; facilitating social change, 60; facilitate self-assessment, 290 Faith-based organizations, (FBO), 56, 92, 109, 286, 288; Faithbased groups, VCT, 200 Faith-based leaders, 119; faithbased leaders, involvement, 177 Faith-based initiatives, 119 “Family-centered society”, 56 Family planning, 26, 30, 129, 132, 184, 241 Family planning associations, 116; Family Planning Association of Kenya, The (FPAK), 262 family planning programs, 89; Family planning purposes, 90; Family planning services, 129 Family Health International (FHI), 31, 180, 181, 182, 185 Fathers and Mothers Orientation Sessions, 136 Fear response, 56; ‘fear of HIV infection”, 101; Fear of AIDS, 90; Fears of deportation; 167; Fear of stigmatization, 203 Feelings of powerlessness, 105

Female cervical mucosal tissue, 293 Female genital cutting, (FGC) 124, 133, 291 Female reproductive tract, 123 Female sex workers (FWSs), 51, 53, 85, 138, 140, 149, 290, 293; clients of, 139; Audiences and Strategy, 147; Formative research, 140–141; Challenges and Lessons Learned, 145– 146; collective societies, 147; Communication Aids, 141; Counseling, 141; Communication approaches, 141; Dropin Centers, 143; Strategic Approaches, 141–143; Advocacy, 141; Mass Media, 142; Community-based media, 142; Health Services, 143; Key Issues to Communicate, 143– 145; Lessons specific, 145; Linkages to Services, 142; outreach, 143; Peer educators, 143; Peer education, 142; Thailand, 145 Femina, a commercial magazine, 113 Femininity, 132 Fidelity, 94 field workers/Agents, 35, 50, 51 Fight against HIV/AIDS, 28, 55, 58, 65, 71, 77, 240 Films, 117; film, “The Gift”, 156 Filmmaker, Fanta Nacro, 107, 108 financial and human resources, 36; financial destitution, 43 First Ladies of Africa, 127 Fishbein, M., 42 Fleet of Hope, 81 focus group discussions, 68 Focus on young Adults, 121 Focussing on Gender, Rationale, 122–125 folk artists, 51 Fonseca-Becker, F., et al., 86, 88 Football Trainers’ Orientation Session, 136 Forced prostitution, 124 Foreign disease, 56 forgoing sexual gratification, 89 formative research, 29, 35, 38, 39, 49, 68, 69, 115, 122, 133,

145, 171, 260; Formative Research, community Mobilization, 77–78; Formative research on motivation, 203; formative research questions, 28 formulation of materials, 52 France, 129 “franchised”, 143 “frontline social workers”, 167 Futures Group, 63, 64, 88 Garret, I., 297 Gatekeeper, 50, 51, 58, 132; gatekeepers for AIDS, 59; Gatekeepers, media, 94; religious, 132 Gay, 149, 155; Gay bars and clubs, 151; gay and bisexual men, 292; communities, 24, 26, 37, 296; directly infected, 148; “gay disease”, 148; gay groups, 34; Gay men, 148, 296, male community, 156; Gay-Related Immune Deficiency Syndrome (GRIDS), 148; Gay rights movement, 149 Gateway for young, 149, 158 Gender, 83; Gender analysis, 128, 132; “Gender” concerns, 130; Gender-defined roles, 125; discrimination, 124; disparity, 123; “gender equitable” qualities, 131; “gender lens”, 128; gender based, barriers, 132; Challenges and Lessons Learned, 131–133; Communication tools 128; disparity, 132; Disseminating experiences, 126; Formative research, 125–127; Gender inequity, 60, 139; Gender inequity, fundamental causes, 122; issues, 124; Key Issues to communicate, 130–131; policies, 127; Peer education, 128; power, 42, 128; power imbalances, 130; gender relations, 43; gender relations, positive, 133; Gender relations and traditions, 85; related message, 127; Gender roles, 130; role stereotypes, 43, 60, 81; sensitive approaches,

340 Strategic Communication in the HIV/AIDS Epidemic 132; sensitization, 60; socialization, 123; sensitivity, 180; Strategic Approaches, 127– 130; Gender-based violence, 147, 180 German Technical Cooperation (GTZ), 277 Ghana, 53, 61, 67, 76, 81, 82, 97, 108, 109, 114, 133, 231, 253, 275 Ghanians, 109 Ghana Social Marketing Foundation, 74, 108, 114 Girl guides, 129 Global Responses, 24–25; Global Fund for HIV/AIDS, Tuberculosis, Malaria, 219 Governments, 84, 122, 228; Government and civil society partners, 58; Government and NGOs, 99; Government ministries, 66; government personnel, 51; governmental policy, 43 Great Lakes of Africa, 293 Green, E.C. and Conde, A., 90 Group identity, 295; Group Communication, 81; group learning, 44; Group and local media, 94; Groups, vulnerable, 104 Guardianship of orphans, 71 GUD, Causes of, 290 Guidelines for breastfeeding/infant feeding, 209 Guinea, 81, 132 Gupta, G.R., 132 Haath Se Haath Milaa, 249, 250 Haiti, 126, 226 Hand-held computers/PDAs, 275 Harm reduction, 159; activities, 164 harmful traditional practices, 124 Highly Active Anti-R etroviral Therapy, HAART, 218, 219, 220, 225; effects of, 296; regimens, 224 HealthNet Zimbabwe, 279 Health of Adolescent Refugees Project, (HARP) 180, 182; Audiences and Strategy, 181; Health issues, 181; program, main strength, 181

healthy behavior, 40; Healthier behaviors, adopt, 120 heat of the moment, 43 health belief model, 41 Health Behavior Officers (HBO), 256 health care, 102; access, 84; providers, 51, 108, 151; utilization, 168; worker referrals, 198 Health care services, 62; Health and social services, 26, 61, 116, 160, 183–237; social support services, 183; health and community services, 81; health communicators and educators, 120; Health and development problems, 80; health, social and environmental problems, 49 Health centers, 24; Health clinics, 129; Health Center Committee, 137 Health Communication, 32, 37, 51, 53; Health Communication Partnership, 46, 47, 48, 50, 70, 83, 122 Health services, 143, 147, 180, 203; Audiences, HIV/AIDS, 187; basic elements, 184; Role of communication, 183 Health systems, 203 HEART campaign (See case Study, Zambia), 94, HEART-Helping each Other Act Responsibly Together, 99; HEART, findings, 100 Helquist, M.J. and Rosenbaum, J., 265 hepatitis C, 158 Heroin, drug, 158 Herpes Simplex Virus-2 (HSV-2), 290 Heterosexual behavior, 60, 297; heterosexual transmission, 149, 156, 225 highly active anti-retroviral therapy (HAART), 25, 26, 40 “high risk”, 289; groups, 26, 98; behavior, 168; risk practices, 115 Hijra, 154, 155, Hijra Construct, (see Plate 4-2), 155 Hinduism, 286

HIV/AIDS, refer to the Human Immunodefeciency Virus (HIV) and its resulting, 29; HIV-1, 56, 290 HIV/AIDS, 24, 25, 26, 27, 30, 31, 33, 34, 38, 39, 40, 41, 42, 44, 46, 59, 62, 63, 67, 68, 81, 98, 101, 104, 122, 127, 156, 160, 197, 202, 215, 217, 224, 225, 232, 233, 234, 246, 248, 252, 255, 257, 260, 261, 281, 285, 286, 288, 295; HIV2, 56, 290; Analysis of issues and impacts, 64; alternative care facilities, 227; accelerate the spread, 127; care and support programs, 124; conditions for spread, 296; HIV communication programs, 43, 130; cure, virgin, 124; curricula, 177; “demystification”, 298; development issue, 298; education, 129; Incidence, 69; incidence, decline, 90, 296; infected children, 206; infection, 46, 119, 173, 282; infection curve, steepest, 158; infection risk, 143; initiatives, 54; intervention to reduce stigma, 106; Issues, 75; Messages, 242; HIV-negative partners, 111, 197; men, 156, 296; negative mothers, 297; “normalizing”, 230; paradox, India, 156; HIV-positive, 63, 71, 96, 101, 197, 200, 289; positive, clients, 185; employees, 104; positive, groups, 155; positive infants, 297; positive mothers, 209, 210; positive, pregnant women, creating awareness, 210–211; positive, treatment for pregnant women, 216; muppet, Kami, 39; Philly Bongoley, 60; Magic Johnson, 60; Nkosi Johnson, 61; Douglas Sem, 61; Kuasi, 108; Philly Lutaaya, 199; positive workers, 227; People Living with (see also PLHA); Positive and open manner, 61; prevalence, 55, 56, 77, 90, 118;

Index 341 prevalence, decline, 96; prevalence rate, increase, 85; prevalence for women, Zambia, 99; Protection, 90; program, 52, 54, 60, 202; promotions, 268; prevention, 33, 44, 51, 241, 248; and care, 59, 66, 225; prevention counseling, 143; HIV-prevention strategy, effective, 96; prevention programs, 98, 260; risk factors, 151; Raise people’s awareness, 86; related behavior, 43; Services, 183; essential services, 184; types of services, 18, 54; sero-conversion, 294; serodiscordant couples, 197; Seroprevelance, 85, 89; spread to young women, 124; spread, preventing among IDUs, 162; STI prevention and care, 128; STI diagnosis, 129; HIV and STI vaccines, 294; rate among sex workers, 139; related behavior, 129; related communication, 261; Stigma, 83, 108; stigma attached to, 102; related stigma, 289; strategy, 54; strategic planning, 64; prevention strategies, 80; testing centers, 56, 97; HIV testing, mandatory, 101; transmission, 33, 39, 46, 60, 104, 211, 251, 259, 297; transmission among IDUs, 161; correcting misconceptions about, 104; transmitted, heterosexually, 148; transmission, prevent, 95, 138, 144; infection, preventing among IDUs, 162; transmission, primary route, 158; transmission, violence against women, 124; “vectors” of, 138; HIV/AIDS interventions, issues, strategy, response, 28 Holistic approach, 121 home care, 40 Homophobia, 148, 149, 154 Homosexual, 225; Homosexually active men, 296; Homosexuality, 101 Honduras, 126 Hormonal changes, 111

hotline, 40, 114, 264; Audiences, 265; challenges and lessons learned, 266–268; hotline counselors, 267; Counseling standards, 267; essential elements, 266; formative research, 264; Hotlines and Information Technologies, 94; local capacity, 268; Hotlines for MSM, 152; ongoing activities, 268; rational, 263–264; referral systems, 267; strength of approach, 265–266; sustainability, 267; tracking systems, 266; standard training curriculum, 269 Hotline case study, audience and strategy, 269–270; case study, lessons learned, 270–271; problems, 269; case study, results, 270 Howard-Grabman, L.H. and Gail Snetro, 83 Human rights, 62; Human rights approach, 298 Human sexuality, 60 Humsafar Trust, Mumbai, 152, 153, 154 iatrogenic transmission/unsafe medical practices, 297, 299 IDP camps, 175 Ignorance and fear, 104 Images of masculinity, 127 Imams, 109 IMPACT, audience and strategy, 263; components of program, 263; comprehensive program, 263; other approaches, 263; outreach, 263; project, 263 impact evaluation, 31, 32 implementation, 31, 33, 34, 36, 38, 49, 68 Implement interventions, 145 Implementation and Monitoring, 48, 49 implication, 45 increasing local capacity, 29 In-dept research, 45 India, 23, 24, 25, 27, 51, 56, 104, 105, 124, 149, 166, 218, 290, 293

India’s National AIDS Control Organization (NACO), 249 Indian companies, 25, 69 individual and community level, 33 Individual behavior, 30, 44, 46, 55 individually-oriented social cognitive theories, 42 Indonesia, 282 Influential Individuals and Societal Groups, 93 Information and condoms, 168 Information Communication Technologies (ICTs), 271–284; applications, 276; audiences, 276; benefits, 271; Challenges and Lessons Learned, 280– 282; contribute, 272; essential elements, 279–280; Formative Research, 275; gender balance, 280; Gender Evaluation Methodology, 280; HIV/AIDS prevention, barriers, 280; infoDev project phases and objectives, 282–283; local capacity, 282; 47; powerful tool, 272; products, 281; rationale, 271; social issue, 278; solutions, 280; strength of Approach, 276–279; tips for success, 281; to be effective, 279; weakness and strengths, 276 InfoDev project, 282, 283; infoDev project case study results, 283; infoDev project lessons learned, 284 Information–education–communication (IEC), 31; IEC services, 147; IEC materials, 168, 173, 177 information and motivation, 45 Information to Community Control, 78 Information dissemination, 79 inhibit behavior and social change, 50 Initiative, components of Unlearning Machismo programs, 126 initial outcomes, 46, 47 injecting drug users IDUs, 29, 34, 51, 53, 78, 106, 147, 156, 158, 165, 225, 248, 255

342 Strategic Communication in the HIV/AIDS Epidemic (IDUs); Advocacy and mobilization, 159; Audiences and Strategy, 164; Challenges and Lessons Learned, 162–163; Communication Strategies, 159; Formative Research, 158– 159; health concerns, 160; HIV prevention messages, 163; Indian IDUs, 164; intervention, 162; Interventions designed, 162; Key Issues to Communicate, 161; Lessons Learned, Case Study New Delhi, 164; Life Skill Training, 160; Links to Services, 160; Outreach intervention, 160; Peer education, 160; Peer outreach session, 159; Rationale, 158; Results, Case Study New Delhi, 164; Services and Communication Linkages, 163; Stigma and discrimination, 162; Strategic Approaches, 159–161; Strategic communication, 159 Innovative communication program, 121 In-school education programs, 62 insert position, 296 Institutional capacity building, 47 Integrated care and support model, 185 Integrating, STI and HIV/AIDS, 191 Inter-Agency Standing Committee, 175 Interdependence of Life Skills, model, 115 Internally displaced people (IDP), 174 International Center for Research on Women, (ICRW), 260 International donors, 92 International HIV/AIDS Alliance, 78, 81, 83, 185 International Partnership Against AIDS, 74 International Planned Parenthood Federation, Western Hemisphere, 190 International public health, 92 International Women’s Day, 199

Internet, 152; Internet portals, 276 interpersonal channels, 41 Interpersonal Communication IPC/C, 38, 39, 46, 47, 82, 94, 141, 187, 209, 288, 290; IPC skills, 220; IPC/C training, 231 interpersonal communication, 30, 39, 44, 49, 72, 105, 169, 265; stigma reduction, 104 interpersonal skills, 38 Inter-sectoral collaboration, 65, 66; approach, 67 Intervention, 21, 25, 26, 34, 35, 36, 42, 46, 55, 138, 142, 288; Interventions to strengthen Community Response, 76–88; interventions, communitybased and mass media, 53; Intervention group, 87; Intervention projects, 153 intravenous drugs, 42 inventory of resources, 29 investigators and interventionists, 42 Islamic Medical Association, 105 Islamic religious leaders, 132 Israel, 168 Issues of sexuality, 81 Ivory Coast, 108 Jana, S., et al., 144 Jana, S., 144 Jasoos Vijay, 249 Johns Hopkins Bloomberg School of Public Health, 31 Johns Hopkins University, 268 Johns Hopkins University/Center for Communication Programs (JHU/CCP), 269 Johns Hopkins’ Center for Communication Programs, (John Hopkins’ CCP) 53, 74, 81, 114 Journey of Hope (JOH), 69, 75, 81 “Know Yourself”, communication toolkit, young people, 122 Kampala, Uganda, 113 KAP/B baseline, 249

Kara Counseling and Training Trust, 200 Kelly, K. and Kalichman, S.A., 43 Kelly, K., et al., 43 Kenya, 59, 89, 94, 128, 134, 194, 199, 210, 275, 293 Kenyans, 263 Key messages, 64 King, R., 41, 42 Kippax, S. and Race, K., 34, 296, 298 Kirby, D., 119 Kisubi, W., et al., 187 Knowledge about MSM, 157 Knowledge and attitudes, 118 Knowledge and fear, 289 Knowledge and interpersonal communication, 128 Knowledge and social behavior, 238 knowledge base, 36 knowledge of HIV/AIDS, 39 Knowledge, changes in attitudes, 132 Knowledge, technical content, 243 known alternatives, 36 Kolkata, India, 144, 158 “language”, of young people, 114 “Living Positively-Vivre Positivement”, 107 La Sala program, 34 Lack of political will, 139 Ladder of Empowerment, 79 Laos, 282 Latin America, 126, 158 laws and policies, 144 lawyers association, 51 Lawyers Collective HIV/AIDS Unit, 104 legal and regulatory environment, 62 legal environment, 50 legal issues, 162 Legislation, influence HIV/AIDS, 104 Lesedi Project, Strategy, 171; Lesedi Project, Lessons Learned, 172; Lesedi Project, Results, 172 Lesotho, 23 Levels of risk, 143 Liberia, 85

Index 343 Life Skills, definition, 114–115; life skills, Approaches, 114; life skill training, includes, 160; life skills education, 113; Life Skills, 118 Lifeline, 269, 270 Lima, Peru, 264 Linkage to Youth Livelihood, 120 Local mass media, 82 lodge owners, 51 logo development process, 68 Long-term partners, 162 Lower-prevalence countries, 90 Lubricants, use of, 157 Lusaka, 90 “macho”, 129; “machismo” culture, 140 “Marcelline et Jojo: Un combat pour la vie”, 107 “Men aren’t from Mars”, 126 “mothi”, 155 Madams, 139 Magnani, R.J. and Karim, A.M., 118 Maharashtra, 50, 144, 293 Mahila Aarthik Vikas Organization, 50 Malaria, 218 Malawi, 116, 199, 235 Malaysia, 158, 170, 282 Male circumcision, 56, 292–293 Male foreskin, 293 Male-friendly spaces, 130 Mali, 108 Manipur, India, 158 Marginalized groups, 282 Marie Stopes Clinic Society, 147 Market models, 297 market segmentation, 34 Masculinity, 132 Mass communication campaign (see also case study, Zambia), 98 Mass communication, 27 Mass media campaign, 24; mass media programs, 47; Massmedia interventions, 251 Masturbation, 136, 145, 154 Maternal/child health clinics, 184 MCH/FP service providers, 190 MDACS, 50

media access, 49; advocacy, 48; campaigns, 189; channels, 37, 59, 238; gatekeepers, 50, 52; Habits, 39; organizations, 69; practitioners, 49; promotion, 189 men who have sex with men, MSM, 28, 34, 50, 53, 60, 62, 78, 89, 102, 148, 155, 157, 170, 255; Adjusting Strategy, 156; Advocacy, 151; African– American, 149; Audiences and Strategy, 157; behavior of, 149; categories not identified with, 149; Challenges and Lessons Learned, 154–156; clients, 151; Communication material, provision for, 152; Communication strategies, 151; communities, 156; concept, 154; Culturally appropriate interventions, 151; Friendly services, for, 153; Gaining Partnerships, 156; groups Drop-in centers, 153; identities, 154, 155; interventions, 157; IPC/ C, 151; Key Issues to Communicate, 153–154; Linkage Services, 153; Mass media, 152; Peer education, 156; Prevention and care interventions, 149; Strategic Approaches, 151–153 Men and Women of Reproductive Age, 93 Mentors, 117, 119 Methadone treatment, 164 Mexico, 149 Microbicides, 145, 295 Middle East, 24 Migrants, 166; community leader, 171; workers, truckers, 248 Military, 140, 176, 180; and civilians, 180; forces, 175, 180; personnel, factors for spread, 175; Miners, 140, 171; Miners Collaborative effort, 172; mining camps, 41; Mining clinics, 171; Ministries of Defense, 175; Ministries of Information and Health, 108; Ministry of Health, 191; Ministry of Health/Home Affairs, 50

misconceptions, 33 Mobile cinema vans, 74 Mobile groups, 169; life styles, 124; population, 23, 29; Communication Approaches, 168; communication interventions, 169; communication outreach, 168; comprehensive approach, 169; Hot Spots, 168; peer education, 168; Rationale, 165–167; risk zones, 168; Service Links, 169; specific locations, 168; Target audiences, 166; Vulnerability to HIV/AIDS, 165; vendors, 50; vocations, such as, 165; mobile work force, 27; Mobile workers, 165 mobilization for social change, 46 Mobilization of people, 231 Mobilizing commitment and resources, 63 Models for action, 82 Modes of transmission and prevention, 136 MOH, 260 Monitored and evaluated, 62, 69; monitoring and evaluation plan, 49 Monitoring results, 71 MoPH, 216, 217 Mother-to child transmission, prevention (PMTCT), 25 Motivation, 44 MSACS, 50 MSM MTCT, 25 Multi-age cohort, 180 Multi-agency crisis intervention teams (CIT), 177 multi-directional communication, 40 multi-disciplinary approach, 30 Multiple sexual partnerships, 93, 125, 138; relationships, 96 Multi-pronged approach, 285 multi-sector response, 50, 61, 65; Multi sectoral action, 24; movement, 53; strategic response, 63; Multi-sectoral response to HIV/AIDS, 64; Multi-sectoral, multi-level collaboration, 64; Multi-sectoral

344 Strategic Communication in the HIV/AIDS Epidemic collaboration, 84; Multisectoral National Orphans’ Care Task Force, 236; Multisectoral workshops, 84 Mumbai, India, 124, 144, 205, 293 Myanmar, 282 “national emergency”, 218 “negotiated safety”, 153 NACO, 51 Naguru Teenage centre, 113 Nairobi, 83 Nambia, 23 NAs, 220 National AIDS Authority (NAA), Cambodia, 63 National AIDS Control Programme, 74 National AIDS policy, 56 National AIDS, 73 National Association of PLHA (NAPWA), 234 National Cancer Institute, 31 National communication program, 108 National Employment Council for Transport Operating Industry (NECTOI), 169 National Logo, 68 National response to HIV/AIDS, 73 national strategy, 41 National Supervision Guidelines, 191 National-Level Policymakers and Program Managers, those responsible, 28 Nature of Sexual behavior, nonrational, 97 NCHADS (National Center for HIV/AIDS, Dermatology and STDs), 64 Need for advocacy, social and community mobilization, 55 Needle exchange, 160, 161; needle exchange programs, 62 161, 162 Needs of PLHA, 185 Negative outcomes, young people, 118 Nepal, 124; Nepali, 124, 168 Netherlands, 168, 224 New Independent States, 158, 162

New treatment technologies, 225 Newspaper, Zambian youth-foryouth, 277 Newspapers, “Trendsetters”, 277 Ngara refuge camps, 177 Nicaragua Comision Interagencial de Salud Reproductiva, 111 Nicaragua, 153 Nicaragua, 37 Nigeria, 89, 133, 214 Nigeria-AIDS eForum, The, 278 Non-Nucleoside Reverse Transciptase Inhibitors (NNRTIs), 218 non-brothel based FSWs, 51 Non-governmental agencies (NGOs), 24, 26, 28, 51, 55, 58, 59, 62, 64, 66, 67, 68, 69, 78, 81, 83, 84, 85, 122, 163, 169, 174, 179, 200, 208, 214, 233, 244, 245, 246, 280, 283, 292; NGO and service center, YRG CARE, 185; NGO, APROPO, 264; NGO, Bhoruka AIDS Prevention, India, 168; NGO, CONNECT, 168; NGO, General Welfare Pratisthan, Nepal, 168; NGO, Lifeline, 268; NGO, local, 86, 147, 216; NGO, Sahara, 164; NGO, Sharan, 164; NGO/social organization, 244; NGOs, international, 216, 279; NGOs, youth-led, 118 Non-penetrative methods, 154 Non-penetrative sex, 145 Nordic nations, 44 norms and standards, 46, 47 North Africa, 24 North America, 42, 149, 287 Nucleoside Reverse Transciptase Inhibitors (NRTIs), 218; NNRTI drug, 220 nutrition counseling, 41 “outreach”, 161; outreach activities, 39; outreach, FSW, 143; Outreach programs, 34; Outreach program, truckers, 169; outreach workers/volunteers, 51; non-brothel based FSWs, 51 O’Sullivan, G.A., et al., 36

obstacle to prevention, treatment, care, and support, 28 Obstacle, religious leaders, 58 Obstetric practices, 25 One World Radio AIDS Networks, 273 Ontaria, Canada, 296 Operational Research, 35 Opportunistic infections (OIs), 24, 25 Oral rehydration salts, 88 organization of SW, 51 Organizational capacity, 83 organizational environment, 45 Orphan crisis, 237 Orphans and Other vulnerable children, OVC, 29, 40, 84, 235 Orphans, 133 OVC, audience and strategy, 235 “participation”, 67 “P-Process”, 31, 32, 46, 48, 49 PALS, “Positive and Living Squad”, 200 paradigm shift, 30, 41, 52 Parent–child communication, 114, 115 PATH’s Reproductive Health Outlook (RHO), 278 Participation Analysis, 48, 50, 52, 57, 66 Participatory approaches, 258, 263; multimedia, 73; Participatory Assessments, 80; Participatory development, 243; participatory interaction, 45; Participatory methods, 58; Participatory planning and training methods, 69, 83; Participatory Planning, 47; participatory process, 44, 68, 69; Participatory Rapid Appraisal (PRA), 80; Participatory Learning in Action (PLA), 80; Partner, 50, 51, 67 Partners and allies, 66 Partnership and alliances, 73, 79 Partner organizations, 204 Pathways Communication Model for HIV/AIDS, 47 Peers, 95, 117; Peer counselors, 256, 257; Peer group, important role, 254; Peer pressure,

Index 345 112, 114; Peer-led, power of, 148; Peers’ opinions and actions, 112 Peer education, 27, 29, 82, 94, 104, 150, 164, 252–263; defined, 252; Peer education programs, 118; Peer education programs, positive impact, 252; Peer education, audience strategy, 260; Peer education, barriers to communication, 260; Peer education, Challenges and lessons learned, 257–258; Peer education, challenges and lessons learned, 261; peer education, feedback, 47; Peer education, Formative research, 253; Peer education, formative research, 252; Peer education, local capacity, 258– 259; Peer education, mechanisms, 252; Peer education, rationale, 252; Peer education, results of case study, Thailand, 260–261; Peer education, strength of Approach, 254– 255; Peer education, tips for success, 259; Peer education, unique characteristics, 254; Peer education, workplace, 258 peer educators, 51, 86, 87, 120, 136, 173, 254; Peer educators, audiences, 253; Peer educators, case study lessons learned, 263; Peer educators, case study results, 263; Peer educators, HIV positive and PLHA, 257; Peer educators, intended audience, 254; Peer educators, long term benefits, 258; Peer educators, miners, 172; Peer educators, services, 255; Peer educators, motivation and compensation, 256; Peer educators, phased-in approach, 256; Peer educators, recruitment, 253; Peer educators, TanZam Highway Project, 256 Penetrative ejaculation, 296 penis-to-mouth oral sex, 292 perceived barriers, 41; benefits, 41; severity, 41; susceptibility, 41;

perceived-risk, self-efficacy, social support, 47 Peru, 126 Philippines, the, 282, 283 Physical and epidemiological data, 297 pimps, 51, 139, 144 Planning and implementation, 31 Planning and resource mobilization, 63 PLHA, 23, 25, 26, 27, 39, 40, 46, 56, 61, 62, 64, 65, 96, 101, 133, 185, 201, 206, 214, 215, 217, 227, PLHA, 228– 237, 248, 265, 278, 286, 295; role models, 228; “breaking the silence”, 60; for change, 60; participants, 107; attitudes towards, 104; Audiences, 228; care of, 105; care, stigma, discrimination against, 104; documentary film, 105; drug access, 225; effective strategy, 286; expectations of, 233; formative research, 228–229; home-based care, 200; human rights, 148; immune system, 221; industrialized countries, 218; involving, 105; Key issues to communicate, 231–232; laws on discrimination against, 56; mobile, 167; negative perceptions, 102; protecting lives of young people, 119; Rationale, 228; Resource constraints, 233; South African media, 107; sterotypes, 107; stigma against, 213; Strategic Approaches, 228; testimonies, 107; training interventions, 105; West African, 107 PMTCT, 29, 40, 68, 210, 211, 217; Communication, breastfeeding, 215; four pronged approach, 207; programs, 206, 212; services, 63; Advocacy activities, 209; Advocacy, 208; Audiences, 208; Challenges and Lessons Learned, 214– 216; Communication goals, 217; communication Planning, Nigeria, 214; communication

role in, 208; Formative Research, 207–208; guidelines for infant feeding, 210; intervention, 214; involves, 220; Key Issues to Communicate, 213–214; mass media, 215; message themes, 213; personal constraints, 215; primary audience, 210; promotion of, 213; reducing stigma in the community, 212; stigma associated with, 215; Strategic Approaches, 208–213; strategies, 213; vertical program, 214; Prevention of MTCT (PMTCT), 206 “prostitution”, term, 138; Prostitution, 101 Policies and laws, 56; policies and legislations, 49; policy and economic issue, 42 POLICY Project (see also AIDS Impact Model), 63 Political and religious leadership, 56; Political and Social Commitment, 73; Political commitment, 24, 56, 61, 62, 65; Political will, 24 Population Council, 123 Population Services International (PSI), 88, 177; India, 205 Populations in conflict, 174; Formative Research, 176; Specific audience, 176; Strategic Approaches, 176–178 Port workers, 98 Positioning, 37, 49 practicing safer sex, 43 Preble, E.A. and Piwoz, E.G., 207, 212 premarital sex, 118 prevention activities, 26; care activities, 78, 79; care programs, 62; interventions, 25; of ABCs, 291; services integration, 185; strategies, 24, 81; primary focus, 284; health behavior, 41 Primary Audience, 50, 51, 95, 96, 135; Primary and secondary audiences, 67 primary health care centers, 185 Primary sexual behavior, 90

346 Strategic Communication in the HIV/AIDS Epidemic Process evaluation, 35, 36 Processes of social mobilization, 66 Program Cycle, 32 program interventions, 50 program monitoring, 36 program process, 50 Project Regional sante Familiale et Prevention du SIDA, 108 promiscuity, 101 promote, program message “A” & “C”, 286 Prosocial development workers, 238; Prosocial purposes, 238 Protease Inhibitors (PI s), 218 protection against HIV/AIDS, 45 provider-client interaction, 27 Provincial government campaigns, 270 Psychological support groups, 25 Public health and infectious disease, 297 Public Health and Social Development Specialists, 28 Public health system, 218; Public health and human rights, 296– 299 Public service announcements (PSAs), 38 Punish discrimination, 104 Puntos dde Encuentro, 37 “queen mothers”, 75 Qualitative evaluation of intervention, 107 Qualitative, 35; Qualitative research, 134 Quality Assurance Department (QAD), 191 Quality Services, access to, 184 Quality Teams, 188 Quantitative, 35 “risk behaviors”, 104 “risk groups”, 104 communication, 28 Radio, 39, 44, 59, 67, 75, 99, 108, 117, 127, 128, 244, 249; radio ownership, 39; Radio, interface, 281; radio programs, 38 Rakesh, S., 157 Rallies, 67 RAP+, 108

Rapid testing kits, 299 Rationale, advocacy to strengthen Political Commitment, 55–57 R ationale, Communication to reduce stigma, 101–102 Rationale, Sex Workers, 138–140 receptive position, 297 reduce HIV transmission, 63 reduce risk of infection, 41 reduce stigma, 55 reduced Transmission of HIV and social norms, 47 reducing HIV infection, 42, 89 reducing stigma, 40, 60, 63, 69, 108 reduction of HIV/AIDS incidence and prevalence, 90 reductions in casual partners, 90 Referrals, information, 230; Referral cards, bilingual, 168; referral points, 120; refugee settings, 29 Refugees, 177 regional communication, 283 reproductive and sexual services, 190 Reproductive Health (RH), 121; Reproductive health advocates, 292; Reproductive health education programs, 118; reproductive health education, 130; R eproductive health HIV/ AIDS, fight against, 95 resource allocation, 47, 56, 58, 84 resources, human and financial, 47 response against HIV/AIDS, 74, 78 Reverse Transciptase Inhibitors (RTIs), 218 risk behavior, 45, 102, 171, 297; migrant population, 171; levels, 259; factors, 294; of HIV/AIDS, 85; infection, 96; perception and behavior, 298; perception, 42, 294; risk reduction behaviors, 94, 111; risk versus benefits, balance, 98; risk-taking behavior, 165; risky sexual behavior, 118; risky, Unprotected Penetrative Sex, 153 Role models, 119; Role model, enhance self-efficacy, 131; Role

of communication, Health services, 183; role-plays, 83; roles of communication, 28; role of communication, clinical and social services, 29 Rotary Club of Dhaka, Bangladesh, 105 ‘safer’ behaviors, reinforcing, 99 “safe haven”, 277 “Sitting Youth”, 86 “social franchising”, 189 “Standing Youth”, 86 “Straight”, 154 “strategic design and development”, 46 safe sexual behavior, 129; safer sex practices, 24, 26, 43 sailors, 140 sale of condoms, 89 San Francisco, 148, 299 Sanpatong District Hospital, Thailand, 216; Sanpatong Hospital, 217 Santé Familiale et Prévention du Sida (SFPS), 107, 108 Sara Communication Initiative (SCI), 133; Sara life skills clubs, 116; Sara stories, videos, radio series, 133; Sara, positive influence, 134; Sara, Program activities, 134; Sara, role model, 134 Saunders, S.G. and Helquist, M., 265 Save the Children (USA), 128, 236 Scalway, T., 44 Secondary Audience, 50, 51 segment, 31, 33, 34, 35, 39, 42 self-efficacy, 42, 43 Senegal, 24, 90, 108, 273 Seres, peer groups, 86, 87 Sereopositive, 25, 27 Sero-discordant couples, 97 Service access, 47 Service Delivery, 73; integration, 184–185; approaches, 143; complexity, 190; Service integration, examples, 190; Challenges and Lessons Learned, 190–191; Service Performance, 47

Index 347 service providers, 40, 51, 116; Service providers, negative effect, 191 Sexto Sentido, 153 “Sex” refers to, 130; sex, 44 sex workers, 27 29, 34, 39, 44, 51, 60, 62, 63, 78, 89, 91, 96, 102, 104, 106, 124, 144, 146, 147, 148, 197; Sex and sexuality, 83; sex facilities, commercial, 98; Sex with a virgin, 60; Sexual “deviance”, 101; sexual abstinence, delay, 47; Sexual abuse and exploitation, 124, 133, 179, 242; avoidance, 135; Rationale, Sex Workers, 138–140; sexual activity, 43; sexual arousal, 43; sexual behavior, 26, 43, change, 41; Sexual debut, 24, 125, 127, 133; Sexual debut, delay, 94, 97, 135; Sexual encounters, 97; sexual freedom, 26; sexual mores, 43; Sexual partners, 24; Sexual risk behavior, 98; sexually active, 31, 94, 96; Street-based sex workers, 225; Sex and sexual transmission of HIV, 97 Sexual and reproductive health (SRH), 81, 83, 115, 120, 135; care for men, holistic approach, 130; counseling, 116; education, 137; health education, 119; issues, 137; services, 143 Sexuality Education Programs, 119 Sexually transmitted diseases, 101; STD/HIV, orientation, 86; STI and HIV information and counseling, 152; STI treatment, 62, 116, 143, 144, 147, 161, 171, 187; STI diagnosis and treatment, 40, 143, 144; STI treatment, promote, 84; STI, killer disease, 291; STI/ HIV peer education program, 263; STI/HIV transmission, 121, 125; STIs among MSM, 157; STIs and HIV, new findings, 290–295; STIs, patients with, 91

SHAKTI project, Lessons learned, 147; project, Results, 147; means, stands for, 147 Sierra Leone, 85 Siguiri District, Guinea, 86 Singhal, A. and Rogers, E.M., 245 Situation Analysis, 49 situation assessment, 46 situational influences, 43 Situation and response analyses, 73 Sociedade Civil Bem-estar Familiar do Brasil, 129 Social and Behavioral Analysis, 49 social and environmental influences, 44 social change approach, 44 social development programs, 40 social inoculation, 42 Social mobilization, 27, 28, 46, 53, 65–76; Strategic Approaches, 78–84; adolescent RH issues, 122; Advocates, 67; Audience and actors, 66–67; communication and training tools, 69; Formative Research, 66; process indicators for, 72; process, 67, 71 social marketing firms, US-based, 88 Social marketing programs, 96 Social marketing, condoms, 90, 94, 177 Sonagachi Project, 144–145 South Africa AIDS Helpline, 264, 268 South Africa Commuter AIDS Information Project, 233 South Africa, 23, 25, 39, 60, 83, 88, 124, 169, 171, 197, 223, 226, 242, 276, 277, 278, 287, 293 South African Department of Health, 268 South African Storyteller Group, 107 South Asia, 271 Southeast Asia, 282 Southern Africa, 124, 293 “Speak Easy” Youth Radio, 114 specific audiences, 28; specific behavior, 36; specific interventions, 41

Speizer I.S., et al., 259 Sri L anka, 175; Sri L ankan government, 281 Stakeholders, 51, 64, 169, 179; participation, 26 Stall R.D., et al., 296 Stepping Stones Approach, 128 Stewart M.J., et al., 281 Stover J. and Begala, J., 64 Stigma, 76, 101; addressing, 288– 290; against homosexuality, 149; and discrimination, 101, 102, 146; and discrimination, young girls, 124; attitudes, 102; Challenges and Lessons Learned, 106; consequence, 101; Formative research, 102– 103; FSWs, 138; reducing strategies, 103; reduction Audiences, 103; reduction, 47; six major findings, 289; Strategic Approach, 103–105 Stop AIDS, Love Life program, 53, 61, 108 Straight talk, Ugandan organization, 113, 116 Strategic communication, 26, 27, 30, 35, 37, 38, 40, 41, 44, 45, 49, 53, 54, 55, 56, 127, 242, 299; multi-sectoral Partnership, building, 83; Strategic Approaches, promotion of the ABCs, 94; approaches, 28, 29; interventions, 115; objectives, 50; Planning, 32; programs, 28, 40; an essential ingredient, 26–27; Components of, 72, 73 strategic design, 31, 32, 48, 49 Strategic partnerships, 79 Strategic Plan/Health Priorities, 47 strategic Positioning, 36 Strategies and channels, 94 structural and environmental factors, 42 Structural approaches, 167, 299; factors, 24 “sugar daddies”, 124, 130, 133 sub-Saharan Africa, 23, 24, 88, 122, 123, 149, 158, 175, 219, 235, 291, 297 Success story, Senegal, 55 Supportive Environment, 47

348 Strategic Communication in the HIV/AIDS Epidemic sustainable outcomes, 47 Sustained denial, 76 Swaziland, 23 Sweden, 60, 129 Synergy APDIME toolkit, 279 syphilis, cure for, 140 System interventions, 115 Systemic Approach, 31 “triple cocktail”, 218 Tamil Nadu, India, 165 TAMPEP project, 169 Tanzania, 81, 104, 113, 178, 197, 202, 241, 253, 256, 289 target audience, 31 target populations, 34, 36, 263 targeted behavior change, 100 Targeting, Indian youth, 250 Tea Parlor Case Study, Audience and Strategy, 173; lessons learned, 174; results, 173; drop-in centers, 173; major objectives, 173 Teleconference, 273 Telemedicine, 273, 279 telephone hotlines, 29, 263–271; counselors, 267 Telkom, 269 tertiary audience, 35, 52 testimonials, 251; testimonies of people infected, 230 Thai Business Coalition, 104 Thai red Cross, 216 Thailand, 25, 27, 39, 42, 56, 90, 92, 98, 142, 144, 169, 175, 206, 217, 218, 225, 226, 230, 254, 259, 260, 282, 294, 299 The Policy Project, 58, 62 Theater, 82 theories of communication, 40 Togo, 108, 188 Trafficking of young girls, 124, 146 Training and activity packages, 109 Transactional sex, 116, 149, 175, 282 Transformative approaches, 132 Transsexuals, those who, 155 treatment of OIs, 40 Triple therapies, 218 Truck Drivers Project, 167

truck drivers/truckers, 27, 51, 78, 149, 242; TH, truckers, 166 Truck stops, 140, 256; trucking points, 205 Truckers Federation, 51 Tuberculosis, 298; TB patients, 273; TB hepatitis, 160 TV serial drama, Soul City, 242; TV serial, “Things we do for love”, 114 TV, 28, 29, 39, 44, 52, 59, 67, 75, 94, 97, 99, 108, 109, 114, 117, 127, 223, 242, 248, 249 Tweedie et al., 76, 81, 108 Twende na Wakai, 241 Uganda, 24, 25, 27, 55, 56, 60, 71, 77, 88, 90, 91, 92, 95, 96, 105, 115, 116, 119, 128, 134, 135, 180, 181, 182, 190, 191, 197, 199, 200, 202, 215, 219, 273, 275, 288, 293, 299 Uganda AIDS Commission, 65 Uganda, Church of Uganda, 65 UK, 105 Ukraine, 158 UN Department of Peace Keeping Operations (DPKO), 176 UN partners, 122 UN, 179, 296, 298; agencies, 181, 208, 216 UNAIDS best practice Key Materials, 199 UNAIDS, 105, 108, 125, 139, 140, 144, 147, 148, 157, 163, 166, 170, 172, 174, 175, 176, 185, 204, 206, 219, 282, 283, 286, 289 Undocumented workers, 170 UNESCO, 227, 281 UNFPA, United Nations Population Fund, 180 UNHCR, 178, 182 UNICEFs, 133, 206, 242, 245, 247 Uniformed services, 65 Universal Unitarianism, 287 University of Transkei, 279 Unlearning Machismo, 126 Unprotected sex, 197, 296 Unsafe abortions, 297 Unsafe medical practices/iatrogenic transmission, 297

Unwanted sexual advances, 134 US Census Board, 235 US, 115, 148, 155, 156, 194, 224, 238, 273, 277, 278, 280, 281, 297 USAID, 108, 130, 202, 205, 235, 263, 268; USAID -Dhaka, 121; USAID/Zimbabwe, 204 Use of condoms, 226 vaginal sex, 153, 292 Valentine’s Day, 199 Voluntary Counseling and Testing, VCT, 143, 144, 151, 159, 165, 178, 186, 187, 211, 216, 265, 294; Africa, 194; and ART, 296; Audiences, 196– 197; benefits, 195; centers, 255; Challenges and Lessons Learned, 201–204; communication challenges, 203; Evaluation Tools, 199; Formative research, 195–196; importance, 210; increasing demand, 202; increasing use, 193–206; India, 205; integrating, 202; Key Issues to communicate, 201; national counseling guidelines, 203; objectives, 194; peer education, 199; point of entry, 194; prime audience, 197; program, Tanzania, objectives, 202; programs, 220; rates, pregnant people, 217; Rationale, 193; Strategic Approaches, 197– 201; Supportive Environment, 200; value of prevention, 195; youth-friendly need, 203 VCT services, 199; Communication, 197; establishing, 196; forms, 194; generating demand, 196; principle, 194 Vehicles to disseminate, 202 Vietnam, 158, 167, 168, 282, 283 Viral load, reducing, 218 Vulnerability to HIV, FSWs causal factors, 138 vulnerable groups, 205 Vulnerable to, 167 Vulnerable, women and girls, 175

Index 349 “window period”, 203 WAGGGS, World Association of Girl Guides and Girl Scouts, 180 Welkom, Free State Province, 171 Wellness Information site, 277 West Africa, 244 West Bengal, 144 Western Europe, 148, 154 Western Kenya, 293 Women, violence against, 203 Women’s Commission for Refuge Women and Children, 175, 181, 182 Women’s organizations, 208 World AIDS Day, 199

World Bank, 277, 282 World Health Organization, 297; WHO, 130, 178, 184, 206, 219 World Links Program, 277 World Trade Organization, 218 World Vision, 167 World Wide Web, 276 Worldspace Foundation, 274 Worldwide Hospice and Palliative Care Online Network, 278 Youth Activists Organization, Zambia, 136, 137 Youth empowerment Foundation (YEF), 264

Youth Reproductive Health/HIV/ AIDS, 136 Yunnan Province, China, 282 Zambia Sexual Behavior Study, The (CSO, Zambia), 99, 105 Zambia, 23, 24, 90, 94, 95, 98, 105, 175, 180, 199, 230, 240, 287, 289 Zambian, 118, 136 Zidovudine (ZDV), 206; ZDV therapy, 216 Zimbabwan, 168, 169 Zimbabwe, 23, 145, 195, 204 ZIPHCOMM project, 274

About the Authors Neill Mc Kee is a communication specialist with 35 years of experience in international development, 15 of which have been based in developing countries. At the Center for Communication Programs at the Bloomberg School of Public Health, Johns Hopkins University from 2001 to 2003, he was the Senior Technical Advisor for communication on HIV/AIDS and adolescent health, and Associate Director for Communication Sciences, Health Communication Partnership. He is presently the head of CCP’s Healthy Russia 2020 Project, based in Moscow. Neill McKee is the author of Social Mobilization and Social Marketing in Developing Communities (1992) and chief editor and contributing author of Involving People, Evolving Behaviour (2000), two important books in the strategic communication field. He has worked with UNICEF in Asia and Africa from 1990 to 2000 and is the originator of the social cartoon characters Meena and Sara who have become popular role models for the empowerment of girls in South Asia and Africa respectively. He has also published a number of articles in the field of development communication and has produced over 30 films in international development in the 1970s and 1980s. Jane T T.. Bertrand is currently Director of the Center for Communication Programs and a Professor at the Bloomberg School of Public Health, Department of Population and Family Health Sciences, Johns Hopkins University. Dr Bertrand began her career in the mid-1970s in Information Education Communication (IEC) for family planning. From 1979–2001, she was a faculty member at Tulane University School of Public Health and Tropical Medicine, and she chaired the Department of International Health and Development from 1994–99. During the 1980s, she worked extensively on family planning operations research in the Democratic Republic of the Congo (formerly Zaire), and was living in Kinshasa when AIDS emerged as a frightening new disease. During the 1990s, her work focused primarily on program evaluation. Since her move to Johns Hopkins in 2001, her work has centered on behavior change communication for reproductive health and HIV/AIDS. She has written or co-authored over 60 peer-reviewed articles, and has written several manuals on program evaluation, including one that focuses on evaluating HIV/AIDS programs for NGOs. Antje Becker Benton Becker-Benton Benton, a native of Germany, has been working as a Health Communication Specialist with the Johns Hopkins Center for Communication Programs (JHU/CCP) since 1997. She is currently seconded as Behavior Change Communication Advisor to the CORE Initiative, focusing on HIV/AIDS communication for faith-based and community-based programming. Ms Becker-Benton has been involved in HIV/AIDS work since the early 1990s, is experienced in developing strategic communication programs at the regional, national, and community level and has worked with youth programs in various African countries. She

About the Authors 351

lived and worked on the White Mountain Apache Reservation in 1996, to develop a youthfor-youth radio talk show and local media campaign for the JHU/Center for American Indian and Alaskan Native Health. During her stay in South Africa from 2000–2001, she developed communication strategies for Daimler/Chrysler’s AIDS workplace program and for Bush Radio. Ms Becker-Benton holds Masters degrees in Political Science (Free University, Berlin) and Health Education/Promotion (JHU) and has published a “Guide to Community Health Communication,” for the GTZ in 1997.