An Annotated Bibliography Part 2: the Response to the Epidemic: Culture of Prevention and Care

Prepared for UNESCO by the Social Science Research Council Vinh-Kim Nguyen University of Montréal Jennifer Klot Social Science Research Council Alton Phillips New York University Catherine Pirkle University of Montréal CLT/CPD/CAD-SSRCBIB/1 For more information please contact: UNESCO Division of Cultural Policies and Intercultural Dialogue 1, rue Miollis F - 75732 Paris cedex 15 [email protected] Tel: +33-1-45 68 43 30 Social Science Research Council 810 Seventh Avenue, 31st Floor New York, NY 10019 [email protected] Tel: 212.377.2700 Fax: 212.377.2727 Disclaimer: The authors are responsible for the choice and the presentation of the facts contained in this text and for the opinions expressed therein, which are not necessarily those of UNESCO and do not commit the Organization. This document was published only in English and is available at http://www.unesco.org/culture/aids and http://www.ssrc.org/programs/HIV/ Table of Contents Introduction 4 Part I: Culture and everyday life: micro and macro approaches A. Power and everyday life 1. Gender roles and power relations 6 2. Sexual violence and exploitation 11 3. Sexuality and constructions of identity 15 4. Demographic issues and reproductive health implications 19 a. Migration 21 b. Orphans and vulnerable children 26 B. Systems of Thought 1. Communities of worship 31 2. Explanatory systems and bodily practices 34 3. Healing systems 41 Part II: The response to the epidemic: cultures of prevention and care A. Biomedical responses, impacts and uptake 44 B. Behavioral approaches 48 C. Human rights based approaches 57 D. Prevention and education 60 E. Health Systems and Policy 65 F. Civil Society 68 G. Governance, development and political economy 72 H. Security 77 Part III: Literatura Española 80 Part IV: Littérature Française 90 Introduction While several decades have passed since HIV was first identified, the pandemic’s complexities persist in challenging communities, countries and response efforts. The challenges associated with HIV and AIDS have proven to be espe- cially difficult because they differ from culture to culture. The ways in which the pandemic is regarded as well as the ways in which responses are conceived and implemented are intimately linked to factors such as traditional practices, gender issues and beliefs. For these reasons, UNESCO advocates for interventions that are culturally appropriate, gender and age sensitive, grounded in human rights and involve people living with HIV at all stages. According to the World Conference on Cultural Policies in Mexico (1982), and the UNESCO Universal Declaration on Cultural Diversity (2001) culture in its anthropological approach, is a set of distinctive spiritual, material, intellectual and emotional features of a society or social groups, which encompasses, in addition to arts and literature, lifestyles, ways of living together, value systems, traditions and beliefs. Given the wide range of dynamics which culture may include, designing culturally appropriate programs for HIV and AIDS education can be extremely challenging. In an attempt to assist in these efforts, this annotated bibliography provides an overview of theoretical perspectives analyzing the com- plex relations between culture, HIV and AIDS. In particular, it will demonstrate how the cultural lens offers a critical per- spective in shaping the response. It also offers practical insights into how responses to HIV and AIDS can be made more accountable to achieving epidemiologically and historically meaningful cultural change. This bibliography is divided into two main sections. In the first section, we have gathered literature that examines how culture shapes the pandemic and its impacts. In the second, we have grouped references that focus on the response to the epidemic, and situate this response in the broader socio-cultural context. What follows is a short brief overview of the document’s organization and content. Part 1: Culture and everyday life: micro and macro approaches The role of culture in addressing HIV and AIDS has evolved considerably over the past two decades, and the epidemic itself has forced critical examination of how the concept of culture has been used in biomedical and social science research. By far, the most voluminous literature has examined culture as an explanatory force in understanding power and its ramification in the everyday lives of individuals. We have grouped these references into four areas. The first area includes literature that considers how gender roles and power relations shape patterns of vulnerability and levels of risk and, therefore, trace social fault lines along which the epidemic can spread. We have devoted the second part to the growing body of research connecting sexual violence and HIV. The third group focuses on sexuality and identity, and shows how these factors may provide exposure to or protection from contracting HIV. The fourth group brings together a broad demographic and quantitative literature concerned with how population structure and dynamics can shape epidemics through, for instance, patterns of sexual relationships and family structure. Two sub-sections are organized around (1) orphans and vulnerable children, and (2) migration. Finally, a related body of work examines culture as systems of thought that shape a diversity of social relations and inform everyday practices that may inhibit or accelerate HIV transmission. We have divided this literature into references that deal with how culture organizes (1) communities of worship, (2) explanatory systems and bodily practices, and (3) healing traditions. Culture, HIV and AIDS: An Annotated Bibliography Part 2: The response to the epidemic: culture of prevention and care The literature on the response to HIV and AIDS closely tracks its evolving nature. We have thus organized this literature according to which facet of the response to and impact of the epidemic it is concerned. The first section deals with the biomedical response, here narrowly defined as those biomedical technologies that are deployed in an effort to stem the spread of HIV. These include HIV testing, sexual technologies such as condoms and microbicides, circumcision, and antiretroviral therapy and vaccines. The second section selects from a voluminous literature concerned with the behavioral response to the epidemic, the most of which is concerned with high risk groups and the strategies used to target and intervene in these populations. A minor literature is included here which deals with reinvigorated and rein- vented cultural practices that represent indigenous attempts to behavior change. A third section brings together a di- verse set of references concerned with the human rights response, a particularly strong movement that developed in the wake of challenges arising from HIV associated stigma and discrimination. A significant body of literature reflects a growing trend away from individually focused responses to those addressing broader systemic and social determinants. The fourth section of this review therefore brings together literature that is concerned with the role of education, particularly in prevention. The fifth section reflects the growing concern with health systems reform and policy responses to the epidemic, a concern that is driven by the impact of HIV on health systems access and utilization. The sixth section groups together studies of the role and impact of civil society, under- stood to include organized and spontaneous forms of religion including faith-based organizations, NGOs and grass- roots community groups. The seventh section provides an analytic and descriptive focus of national responses to HIV and AIDS, and frames these literatures at broader global context. The final, eighth section reviews recent literature that address HIV and AIDS in post-conflict situation. Method This bibliography is compiled from an extensive review of academic, policy and “grey” literature in English, French, and Spanish, utilizing the following electronic databases: CSA Illumina (http://www.csa.com), ISI Web of Knowledge (http://www.isiknowledge.com), Proquest® (http://proquest.umi.com), OVID® (http://gateway.ut.ovid.com), and Science Direct (http://www.sciencedirect.com/science/search/allsources). Development-oriented databases such as Eldis and the Development Gateway were also searched, as were the websites of multilateral and bilateral organizations, including UNAIDS, UNICEF, UNDP, UNESCO, the World Bank, and USAID, and major international research and non- governmental organizations, including the Population Council, the Alan Guttmacher Institute, and the International AIDS Alliance. More than twenty key terms were used to search for relevant articles and documents, ranging from the general (such as culture, gender, sexuality, religion, governance, migration, family structure, human rights) to the more specific (e.g. faith-based organizations, sexual and gender based violence and exploitation, traditional healers, orphans, adolescents, and microbicides). More than 1500 articles were reviewed. Final selections were based on the number of times articles were cited and the impact factor of the journal. Additionally, special efforts were made to include “classic” books and journal articles, as well as more innovative and cutting-edge papers. 5 Part I. Culture and everyday life > Power and everyday life > Gender roles and power relations Amaro, H. (2000). "On the margin: Power and women's HIV risk reduction strategies." Sex Roles 42(7-8): 723-749. HIV risk and prevention

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