Getting to Zero Global Social Work Responds to Responds Work Global Social Social workers in all parts of the world have been responding to the unique challenges of HIV since the earliest days of the epidemic. HIV was, and remains, a social challenge as much as a biomedical challenge. Social work researchers and practitioners, laboratory scientists and medical practitioners, policy-makers and funders, together with people living with HIV, at risk of contracting HIV and affected by HIV, must work in close partnership with each other to develop and deliver effective, compassionate, accessible and appropriate HIV prevention, treatment, care and support services. In this publication, 18 contributions by social workers, social work researchers and academics document some of the innovative work they are doing so that those responses can be adapted in other places and communities around the world to contribute towards ending the AIDS epidemic by 2030. This landmark book represents a collaboration between the International Association of Schools of Social Work (IASSW), and Getting the Joint United Nations Programme on HIV/AIDS (UNAIDS) as they work together to achieve common goals of zero new HIV HIV infections, zero discrimination and zero AIDS-related deaths. to Zero “This book, a collaboration between UNAIDS, social work educators and Global Social Work researchers around the world, documents innovative social work approaches to Responds to HIV prevention, treatment, care and support. It also provides a valuable resource to social workers, researchers and ISBN 978-0-9941415-4-5 policy-makers as they continue to implement creative and compassionate responses to HIV.” 9 780994 141545 Michel Sidibé, Executive Director, UNAIDS www.masseypress.ac.nz Getting to Zero Global Social Work Responds to HIV Editor in Chief Mark Henrickson (IASSW) Associate Editor David Chipanta (UNAIDS) Regional Editors Vincent Lynch (North America) Hernando Muñoz Sanchez (Latin America and Caribbean) Vimla Nadkarni (Asia) Tetyana Semigina (Europe) Vishanthie Sewpaul (Africa and Middle East) A JOINT PUBLICATION OF THE INTERNATIONAL ASSOCIATION OF SCHOOLS OF SOCIAL WORK AND UNAIDS Contents Foreword 5 Introduction 7 The current state of the global HIV epidemic 11 Part 1: Zero new HIV infections 1. Best practices for evaluating care and support programmes for HIV-affected families: Lessons learned from South Africa 15 Tonya R. Thurman, Brian G. Luckett, Tory M. Taylor, Johanna K. Nice, Melissa R. Carnay and Alexandra Spyrelis 2. Understanding the role of social workers in the promotion and uptake of prevention of mother-to-child transmission of HIV in Zimbabwe 39 Munyaradzi Muchacha and Abel Matsika 3. Exploring the daily challenges of female sex workers to negotiate safe sex in Mumbai, India: What can social workers do? 60 Sharvari Karandikar and Lindsay Gezinski 4. Social workers at the frontiers of technology: Online-based HIV prevention and care for men who have sex with men 80 Rusty Souleymanov 5. Social work and support of people who use drugs in Germany 101 Heino Stöver, Daniel Deimel and Susann Hößelbarth Part 2: Zero discrimination 6. Getting to Zero: A conversation on the label OVC and the welfare of children in sub-Saharan Africa 128 Margaret Lombe, Harriet Mabikke and Ngozi Enelamah 7. Challenges experienced by social workers in placing children living with HIV in foster care in Johannesburg 152 Babbot Muchanyerei and Nontembeko Bila 8. A communist legacy: The untold story of nosocomially infected children with HIV from Romania becoming adults and the role of social workers throughout their lives 178 Florin Lazăr 9. Listening to the voiceless: Lived experiences of asylum seekers living with HIV in Scotland and the implications for social work practice 201 George Palattiyil and Dina Sidhva 10. The many roles of the social worker in shaping the quality of care in transdisciplinary teams as we get to zero 226 Theresa Fox, Michael Hager, Adam Thompson and Donna Van Alst 11. Is zero discrimination possible? Voices from Ukraine 255 Tetyana Semigina Part 3: Zero AIDS-related deaths 12. Medical case management: An ideal place for social workers 282 Diana Ball and Mary Edinger 13. Policy engagements to ensure the future of antiretroviral medicines in Ethiopia: The case of associations and networks of people living with HIV 302 Zena Berhanu and Nathan Linsk 14. The emotional cost of caring for patients living with AIDS: The experiences of caregivers at an AIDS palliative care organization 324 Francine Masson and Adelaide Mangena Part 4: National and regional social work policy and professional development 15. Miles to go before we rest: Two decades of social work responses to HIV stigma in India 348 Melita M. Vaz and Vimla V. Nadkarni 16. Challenges and lessons in three decades of the HIV epidemic and neoliberalism: An analysis of Brazil, Mozambique and South Africa 369 Evandro Alves Barbosa Filho, Ana Cristina Vieira and Solange Rocha 17. HIV and AIDS in the English-speaking Caribbean: Social work responses 391 Letnie F. Rock 18. The social work response in the United States of America to the AIDS epidemic: 1989 to 2016 413 Vincent J. Lynch About the editors and authors 430 Foreword his is more than a compilation of scientific articles on the response to T HIV by social workers. It is also a collection of stories told with candour about restoring hope, dignity and social capital to people and their families in order that they can withstand the shocks they encounter in life. It is about the experiences of people who are vulnerable to HIV and their caregivers, showing us that it is possible to live free from inequality and discrimination. And it is about enabling people living with HIV to live healthy and fulfilled lives. Few can tell these stories better than social workers. Social workers are the conscience of the AIDS response. They are peer educators, researchers and decision-makers. They work at the centre and the margins of communities. Taking a life-cycle approach, social workers accompany people through their life journey—connecting them to services and making services work for them. They make connections every day. Social workers are helping a new generation of children to start free from HIV and remain AIDS-free. They are also helping to move the spotlight to an important group of vulnerable children—children whose parents are living with HIV but who were born free from HIV. Such children experience more health problems and deaths than children whose parents are not living with HIV. They require systematic follow-up and care, which social workers help to provide. Social workers also help people to access antiretroviral therapy and support them to remain on treatment; they assist people to get condoms, opioid substitution therapy or sterile needles, food, housing and employment, and access transport support for clinic appointments; they protect the rights of vulnerable people and help to prevent and treat gender- and sexual-based violence—these are just a few of the connections that social workers make every day. 5 GETTING TO ZERO Above all else, this book highlights the role that social workers play in the lives of vulnerable people and their families and in helping to bring about inclusive societies, dignity for all people, solidarity, social justice and hope. UNAIDS is honoured to partner with the International Association of Schools of Social Work to share these stories. Michel Sidibé Executive Director, UNAIDS 6 Introduction t is with the greatest pleasure that we present this collection of global Isocial work responses to the global HIV epidemic. The book you are reading represents a collaboration between the International Association of Schools of Social Work (IASSW) and the Joint United Nations Programme on HIV/AIDS (UNAIDS). IASSW is an association of institutions of social work education, organizations supporting social work education and social work educators around the world. The values and mission statements of the two organizations have synergies that encouraged cooperation between them in the realization of their shared aims. Since a first joint meeting in March 2014, members of IASSW and UNAIDS discussed the feasibility of working together to achieve common goals of zero new HIV infections, zero discrimination and zero AIDS-related deaths. The joint work plan evolved through fruitful consultations between UNAIDS and IASSW led by Dr Mariangela Simao (Director, Rights, Gender, Prevention and Community Mobilization) and Mr David Chipanta (Senior Advisor, Social Protection, UNAIDS), along with Professor Vimla V. Nadkarni (then- President of IASSW), Professor Susan Lawrence (President of the European Association of Schools and Social Work and board member of IASSW), and Dr Klaus Kuhne, representing the International Federation of Social Workers (IFSW). On 21 October 2014, Professor Nadkarni and Luiz Loures (Deputy Executive Director of UNAIDS and Assistant Secretary General of the United Nations), signed a Memorandum of Understanding between IASSW and UNAIDS at UNAIDS headquarters in Geneva. It was the beginning of a formal joint plan of work between the two organizations. As a first joint event, World Social Work Day was observed on 17 March 2015 with a seminar on the theme “Ending AIDS, Promoting Dignity and Respect for All” in the Kofi Annan conference room of the UNAIDS building in Geneva. There were 150 invited guests from the UN, IASSW, IFSW and 7 GETTING TO ZERO International Council on Social Welfare (ICSW), and their European regional associations. This seminar focused on the role of social work in working with people to prevent and mitigate the impact of HIV, and on how the social work profession could contribute to the goal of ending AIDS by 2030. Resource persons from the World Bank, International Labour Organization (ILO), the United Nations Development Programme India and the World Food Programme participated and shared their work on HIV, social protection and working with social workers.