Social Science Research Council
SSRC Initiative on HIV/AIDS and Social Transformation
Published on: Jan 13, 2004
I. Background and Rationale
The AIDS pandemic is as much a social, political, economic, and cultural problem as a biomedical one. It is altering the gender balance of whole societies, creating huge numbers of orphans, impacting the stability of governments and the functioning of democratic systems. Indeed, it is not too much to say that lives will be lost if AIDS is approached only in biomedical terms without attention to the social factors that shape patterns of infection and access to care, that intertwine AIDS with famine and armed conflict, and that facilitate or thwart well-intentioned interventions.
The AIDS pandemic is as much a social, political, economic, and cultural problem as a biomedical one. It is altering the gender balance of whole societies, creating huge numbers of orphans, impacting the stability of governments and the functioning of democratic systems. Indeed, it is not too much to say that lives will be lost if AIDS is approached only in biomedical terms without attention to the social factors that shape patterns of infection and access to care, that intertwine AIDS with famine and armed conflict, and that facilitate or thwart well-intentioned interventions.
To date, most of the studies carried out by social scientists, epidemiologists and medical researchers have focused on HIV/AIDS awareness, transmission, treatment and prevention. These have focused overwhelming on individual behavior, paying specific attention to "high risk" populations, namely sex workers, displaced people, truck drivers and migrant laborers. Much less attention is given to the environments that shape risk behavior and make individuals more susceptible to disease, and also to the broader social context that HIV/AIDS radically transforms and within which interventions occur.
The experts needed to address the pandemic are thus not just specialists on AIDS, but economists who study the labor force, anthropologists who study cultural reproduction, sociologists who specialize in demographic modeling, and political scientists who understand problems of governance at scales from the local through the national to the global. These specialists and many others are needed to complement the equally vital work of epidemiologists and biomedical researchers, bringing into the field a crucial but largely missing social organizational perspective.
A critical mass of research on how HIV/AIDS is altering social and cultural practices in different social settings and across regions of the world does not yet exist. Only comparative analysis over the long term will reveal why the same intervention may work in one setting and not another, and why the same prevalence rate leads to the collapse of one village while being a tragedy that another survives. The relatively small and disparate work emerging on these questions, including operational and policy research, needs to be deepened, broadened and connected more systematically so that it can inform collective responses to the pandemic from households, communities, political institutions, the private sector, civil society and international organizations.
Saving lives today, for every understandable reason, is the overwhelming priority for limited available resources. But the pandemic will not go away overnight, and our capacity to keep saving lives depends on learning from interventions as they take place, and learning more about the pandemic and its impacts. Responding only to the imperative for immediate action has already resulted in a significant gap in knowledge about the longer term effects of HIV/AIDS and about what responses work: how do we protect the generation of orphans that survive today; how do we replace the teachers dying faster than those being trained; and how do governments respond to their incapacitation? There can be no quick fixes to this human catastrophe - some forms of which will only manifest over time. The tragic reality is that HIV/AIDS and its deadly legacy will extend well into the future, with or without a vaccine. Thus the short-term need for long-term solutions is now another incumbent priority.
II. The SSRC's Initiative on HIV/AIDS and Social Transformation
The Social Science Research Council's initiative on HIV/AIDS and Social Transformation brings together social scientists to address the basic social dynamics and analytic problems raised by the AIDS pandemic. Our initiative starts by recognizing basic changes caused by the pandemic and responses to it. These changes are not only large in scale, they are long-term-and thus attention is needed to how people and social institutions cope with or are changed by them over time.
The Council's commitments to interdisciplinary and cross-regional research and to working with both academics and practitioners are central to making an initiative on HIV/AIDS and Social Transformation both innovative and far reaching. The initiative does not intend to duplicate efforts of other organizations whose mandate focuses on HIV/AIDS. The goal is thus less to advance the social science of health and illness as a separate field than to help researchers concerned with a variety of social issues and intellectual problems including - or especially - those not intrinsically centered on health to bring their expertise to HIV/AIDS research. Rather, the initiative will build on the important studies of critical, yet not fully understood, aspects of the epidemic where social science research can provide invaluable analysis and information. And it will help dispersed projects achieve critical mass and more fully inform new interventions.
The initiative will focus initially on sub-Saharan Africa for obvious reasons but will also include other affected areas throughout the world. A range of research approaches will be supported: from case studies to household surveys, analytic histories of interventions to economic and demographic models. These will benefit from a comparative perspective within and across regions, sectors and issue areas. The research areas highlighted below exemplify the complex interactions between disease, the economy, society and polities. They are early priorities for research, each requiring creative and interdisciplinary thinking to understand how AIDS impacts societies and how interventions could best be designed:
Human Security: New understanding about the ways that HIV/AIDS combines and interacts with other demographic and health crises - with famine, migration, malaria, tuberculosis and other diseases - can highlight the unexpected and reciprocal effects that in turn fuel the epidemic. The pandemic also affects security issues and the way we think about them. For example, both violent conflicts and the peacekeeping operations that respond to them become part of transmission dynamics. At the same time, the disruptions wrought by the disease shape further conflicts and human security issues.
Governance: In many HIV/AIDS affected countries, alarming rates of infection in the public administration, health, education and security sectors have begun to threaten the function of already fragile institutions of governance. At the national level, making the struggle against HIV/AIDS a major priority necessarily diverts resources and attention from some government programs to others and may also produce shifts in relations among different branches and levels of government. Little is known about what works best in getting HIV/AIDS onto political and development agendas and about what drives innovative responses and, conversely, the absence of response - pressure from civil society, international promises of assistance, political leadership?
Rural Livelihoods: Regions of Africa have been suffering under multiple stresses - the health of the agricultural sector and rural livelihoods--drought and other severe weather patterns and civil strife, among others--and now the steadily mounting burden of AIDS is challenging even previously stable agricultural communities. Under the downward spiral of disease and economic stress, some rural communities may cease to be viable, while others may evolve new institutional and social forms that allow, for example, the community to maintain intergenerational learning even as the number of orphans rises. Challenges to economic viability, like decreasing population density, may induce economic innovation, or may simply drive rural farmers into the cities. When rural livelihoods become unsustainable, these failures may spread across time and space, putting new pressures on urban areas, manufacturing and industrial activities, and governments.
Household, gender and inter-generational relations: Among the most striking changes in the pandemic is that women are increasingly and disproportionately infected and affected. This phenomenon itself needs to be better understood. What are the factors (e.g. education, economic security, or even the rule of law) that increase women's ability to negotiate sexual practices - coerced, transactional or intimate? What impact will the added burden of care in HIV/AIDS affected families have on women's role in the labor market? By disrupting family life and creating a generation of orphans, traditional pathways of socialization and developmental processes are fundamentally affected. Understanding the implications of these changes will be crucial for targeting interventions so that existing gender and generational inequalities are not perpetuated.
Access to treatment: The availability of anti-retroviral drugs is not ending the epidemic, but it is changing it and creating new challenges. While simultaneously enabling many to live longer after infection, treatment is also raising many questions about how implementation may affect the epidemiology of the disease - by changing behavior, by shifting investment priorities and by contributing to the development of drug resistant strains. Equally important, the potential availability of vaccines can only achieve its potential in saving lives and defeating the disease if issues of distribution and the politics of access for people living with HIV/AIDS, service provision capacity, and social organization of vulnerability are well understood.
III. Goals and Objectives
This initiative seeks to bring new knowledge and analysis to bear on decision-making and the design of HIV/AIDS interventions and to elevate HIV/AIDS as a priority for global health, development and other policy and research agendas.
To maximize the limited global resources dedicated to social science research on HIV/AIDS, the SSRC will establish and host a Social Science Consortium on HIV/AIDS that will include social science researchers and supporting institutions (universities, research institutions, donors, non-governmental and practitioner groups). It will be guided by an International Advisory Group and seek additional financial support through participating "member" institutions. Activities will be organized around the following objectives:
1.To provide evidence of the social factors shaping the pandemic: The initiative seeks to generate new knowledge of factors determining variation in individual and group susceptibility; the social conditions in which policies, practices, and interventions occur; and the factors enabling varying levels of survival by affected individuals, families, communities, enterprises and systems of governance.
Social science research on HIV/AIDS will be strengthened by supporting dissertation, post-doctoral and masters level research as well as research conducted by community based and practitioner organizations. Special emphasis will be given to young scholars from affected countries. Research planning processes will assist in developing and refining research agendas for practitioner and research institutions; in bringing different disciplines together; and in catalyzing interest within the social sciences on HIV/AIDS with respect to interventions, priority themes and geographic areas.
2.To foster comparative and cross-regional dialogue: So that knowledge can be cumulative and put to effective use, networks will be established or strengthened among researchers and those in policy and practice, as well as among researchers in different fields, in countries within Africa, between Africa and other affected regions and in the global North and South.
Support will be given to strengthen and create networks of social scientists working on the social causes and impacts of HIV/AIDS and on interventions themselves. Advanced tools in multilingual web environments will be used to enhance information exchange between researchers and practitioners, to unify knowledge bases, to link websites of relevant research institutions, universities, researchers and donors, and to provide varied means for knowledge dissemination.
3. To strengthen capacity of institutions, researchers and practitioners to conduct social scientific study of HIV/AIDS and relate this to policy and practice: Institutional and individual capacity is especially needed in countries bearing the brunt of the pandemic in order to train new professionals in research and practice; to produce accurate analyses of local issues; and to help bridge the divides among research, policy, and practice.
Activities will include mentorship and training programs and methodological workshops. South-south and south-north linkages will be facilitated among university based research institutions and with practitioner, NGO and community based organizations. State-of-the-art teaching materials will be published to strengthen research skills within practitioner organizations and to support course development and inter-disciplinary degree programs within the social sciences on HIV/AIDS.
4. To increase the priority of HIV/AIDS on global health, development and other policy and research agendas: New knowledge will clarify the implications of HIV/AIDS for other dimensions of public health and for development, human security, governance, and agriculture; create opportunities for multi-sectoral approaches; and leverage new kinds of resources to address the pandemic and to inform interventions.
Public symposia on thematic and region specific priorities will bring together scholars, policy makers, multilateral and practitioner communities. 'Dialogues' with leading experts will be convened (and proceedings published). Special support or 'membership services' will be provided to multi and bilateral institutions and to individual and corporate donors through briefings, research presentations, field missions, and report writing and dissemination.
IV. Monitoring and Evaluation
A monitoring and evaluation plan will be put in place from the project's inception. Both internal and external evaluations will be used to measure progress and assess obstacles. Increasing scholarship on HIV/AIDS, for example, will be measured not only with respect to the number of fellowships given, but also with respect to the quality and quantity of research produced, articles published in peer-reviewed journals, and the range of practitioners and social science disciplines engaged. Comparative and cross regional dialogue will be assessed by the range of interventions and locations identified in research, the composition of research teams and of electronic resource user groups. Strengthened research capacity will be measured by the way in which HIV/AIDS research is integrated into existing practitioner and academic work, into curricula and by levels of activity among local researchers. The impact of advocacy will be measured by the way in which HIV/AIDS policies, programs and interventions take greater cognizance of the social structural dimensions of HIV/AIDS and by the greater priority given to HIV/AIDS on global health, development and other policy and research agendas. Specially developed advanced database and web resources will also be used to track progress.
Factors that could inhibit success rest largely on the debilitating impact of HIV/AIDS on the research community itself (which will require a higher investment in human resources and capacity building); the methodological constraints inherent in carrying out social science research on HIV/AIDS (which will be addressed directly by focusing on methods within initiatives) and on the challenge of engaging leading researchers in an area that has been largely peripheral to the majority of social science disciplines.
V. Organizational Capacity
The SSRC was given founding support by the Rockefeller family 80 years ago with a mandate to reach across disciplinary and institutional boundaries and to bring the best social research to bear on problems of public concern. The SSRC is an independent, nonprofit nongovernmental organization governed by an international Board of Directors. It works on concrete analytic problems with real world implications by advancing social science research and education, enhancing communication among scholars and improving the quality of publicly available knowledge around the world. The SSRC builds bridges among academic disciplines and between scholarly researchers and foundations, governments, multilateral organizations, NGOs and the public. Some 400 social science researchers from more than 40 countries serve on Council committees, research teams or panels. Its distinctive niche is to innovate and incubate, to identify emergent lines of research that will be enhanced by interdisciplinary or international ties, to help scattered researchers build networks and nascent fields to achieve critical mass.
The experts needed to address the pandemic are thus not just specialists on AIDS, but economists who study the labor force, anthropologists who study cultural reproduction, sociologists who specialize in demographic modeling, and political scientists who understand problems of governance at scales from the local through the national to the global. These specialists and many others are needed to complement the equally vital work of epidemiologists and biomedical researchers, bringing into the field a crucial but largely missing social organizational perspective.
A critical mass of research on how HIV/AIDS is altering social and cultural practices in different social settings and across regions of the world does not yet exist. Only comparative analysis over the long term will reveal why the same intervention may work in one setting and not another, and why the same prevalence rate leads to the collapse of one village while being a tragedy that another survives. The relatively small and disparate work emerging on these questions, including operational and policy research, needs to be deepened, broadened and connected more systematically so that it can inform collective responses to the pandemic from households, communities, political institutions, the private sector, civil society and international organizations.
Saving lives today, for every understandable reason, is the overwhelming priority for limited available resources. But the pandemic will not go away overnight, and our capacity to keep saving lives depends on learning from interventions as they take place, and learning more about the pandemic and its impacts. Responding only to the imperative for immediate action has already resulted in a significant gap in knowledge about the longer term effects of HIV/AIDS and about what responses work: how do we protect the generation of orphans that survive today; how do we replace the teachers dying faster than those being trained; and how do governments respond to their incapacitation? There can be no quick fixes to this human catastrophe - some forms of which will only manifest over time. The tragic reality is that HIV/AIDS and its deadly legacy will extend well into the future, with or without a vaccine. Thus the short-term need for long-term solutions is now another incumbent priority.
II. The SSRC's Initiative on HIV/AIDS and Social Transformation
The Social Science Research Council's initiative on HIV/AIDS and Social Transformation brings together social scientists to address the basic social dynamics and analytic problems raised by the AIDS pandemic. Our initiative starts by recognizing basic changes caused by the pandemic and responses to it. These changes are not only large in scale, they are long-term-and thus attention is needed to how people and social institutions cope with or are changed by them over time.
The Council's commitments to interdisciplinary and cross-regional research and to working with both academics and practitioners are central to making an initiative on HIV/AIDS and Social Transformation both innovative and far reaching. The initiative does not intend to duplicate efforts of other organizations whose mandate focuses on HIV/AIDS. The goal is thus less to advance the social science of health and illness as a separate field than to help researchers concerned with a variety of social issues and intellectual problems including - or especially - those not intrinsically centered on health to bring their expertise to HIV/AIDS research. Rather, the initiative will build on the important studies of critical, yet not fully understood, aspects of the epidemic where social science research can provide invaluable analysis and information. And it will help dispersed projects achieve critical mass and more fully inform new interventions.
The initiative will focus initially on sub-Saharan Africa for obvious reasons but will also include other affected areas throughout the world. A range of research approaches will be supported: from case studies to household surveys, analytic histories of interventions to economic and demographic models. These will benefit from a comparative perspective within and across regions, sectors and issue areas. The research areas highlighted below exemplify the complex interactions between disease, the economy, society and polities. They are early priorities for research, each requiring creative and interdisciplinary thinking to understand how AIDS impacts societies and how interventions could best be designed:
Human Security: New understanding about the ways that HIV/AIDS combines and interacts with other demographic and health crises - with famine, migration, malaria, tuberculosis and other diseases - can highlight the unexpected and reciprocal effects that in turn fuel the epidemic. The pandemic also affects security issues and the way we think about them. For example, both violent conflicts and the peacekeeping operations that respond to them become part of transmission dynamics. At the same time, the disruptions wrought by the disease shape further conflicts and human security issues.
Governance: In many HIV/AIDS affected countries, alarming rates of infection in the public administration, health, education and security sectors have begun to threaten the function of already fragile institutions of governance. At the national level, making the struggle against HIV/AIDS a major priority necessarily diverts resources and attention from some government programs to others and may also produce shifts in relations among different branches and levels of government. Little is known about what works best in getting HIV/AIDS onto political and development agendas and about what drives innovative responses and, conversely, the absence of response - pressure from civil society, international promises of assistance, political leadership?
Rural Livelihoods: Regions of Africa have been suffering under multiple stresses - the health of the agricultural sector and rural livelihoods--drought and other severe weather patterns and civil strife, among others--and now the steadily mounting burden of AIDS is challenging even previously stable agricultural communities. Under the downward spiral of disease and economic stress, some rural communities may cease to be viable, while others may evolve new institutional and social forms that allow, for example, the community to maintain intergenerational learning even as the number of orphans rises. Challenges to economic viability, like decreasing population density, may induce economic innovation, or may simply drive rural farmers into the cities. When rural livelihoods become unsustainable, these failures may spread across time and space, putting new pressures on urban areas, manufacturing and industrial activities, and governments.
Household, gender and inter-generational relations: Among the most striking changes in the pandemic is that women are increasingly and disproportionately infected and affected. This phenomenon itself needs to be better understood. What are the factors (e.g. education, economic security, or even the rule of law) that increase women's ability to negotiate sexual practices - coerced, transactional or intimate? What impact will the added burden of care in HIV/AIDS affected families have on women's role in the labor market? By disrupting family life and creating a generation of orphans, traditional pathways of socialization and developmental processes are fundamentally affected. Understanding the implications of these changes will be crucial for targeting interventions so that existing gender and generational inequalities are not perpetuated.
Access to treatment: The availability of anti-retroviral drugs is not ending the epidemic, but it is changing it and creating new challenges. While simultaneously enabling many to live longer after infection, treatment is also raising many questions about how implementation may affect the epidemiology of the disease - by changing behavior, by shifting investment priorities and by contributing to the development of drug resistant strains. Equally important, the potential availability of vaccines can only achieve its potential in saving lives and defeating the disease if issues of distribution and the politics of access for people living with HIV/AIDS, service provision capacity, and social organization of vulnerability are well understood.
III. Goals and Objectives
This initiative seeks to bring new knowledge and analysis to bear on decision-making and the design of HIV/AIDS interventions and to elevate HIV/AIDS as a priority for global health, development and other policy and research agendas.
To maximize the limited global resources dedicated to social science research on HIV/AIDS, the SSRC will establish and host a Social Science Consortium on HIV/AIDS that will include social science researchers and supporting institutions (universities, research institutions, donors, non-governmental and practitioner groups). It will be guided by an International Advisory Group and seek additional financial support through participating "member" institutions. Activities will be organized around the following objectives:
1.To provide evidence of the social factors shaping the pandemic: The initiative seeks to generate new knowledge of factors determining variation in individual and group susceptibility; the social conditions in which policies, practices, and interventions occur; and the factors enabling varying levels of survival by affected individuals, families, communities, enterprises and systems of governance.
Social science research on HIV/AIDS will be strengthened by supporting dissertation, post-doctoral and masters level research as well as research conducted by community based and practitioner organizations. Special emphasis will be given to young scholars from affected countries. Research planning processes will assist in developing and refining research agendas for practitioner and research institutions; in bringing different disciplines together; and in catalyzing interest within the social sciences on HIV/AIDS with respect to interventions, priority themes and geographic areas.
2.To foster comparative and cross-regional dialogue: So that knowledge can be cumulative and put to effective use, networks will be established or strengthened among researchers and those in policy and practice, as well as among researchers in different fields, in countries within Africa, between Africa and other affected regions and in the global North and South.
Support will be given to strengthen and create networks of social scientists working on the social causes and impacts of HIV/AIDS and on interventions themselves. Advanced tools in multilingual web environments will be used to enhance information exchange between researchers and practitioners, to unify knowledge bases, to link websites of relevant research institutions, universities, researchers and donors, and to provide varied means for knowledge dissemination.
3. To strengthen capacity of institutions, researchers and practitioners to conduct social scientific study of HIV/AIDS and relate this to policy and practice: Institutional and individual capacity is especially needed in countries bearing the brunt of the pandemic in order to train new professionals in research and practice; to produce accurate analyses of local issues; and to help bridge the divides among research, policy, and practice.
Activities will include mentorship and training programs and methodological workshops. South-south and south-north linkages will be facilitated among university based research institutions and with practitioner, NGO and community based organizations. State-of-the-art teaching materials will be published to strengthen research skills within practitioner organizations and to support course development and inter-disciplinary degree programs within the social sciences on HIV/AIDS.
4. To increase the priority of HIV/AIDS on global health, development and other policy and research agendas: New knowledge will clarify the implications of HIV/AIDS for other dimensions of public health and for development, human security, governance, and agriculture; create opportunities for multi-sectoral approaches; and leverage new kinds of resources to address the pandemic and to inform interventions.
Public symposia on thematic and region specific priorities will bring together scholars, policy makers, multilateral and practitioner communities. 'Dialogues' with leading experts will be convened (and proceedings published). Special support or 'membership services' will be provided to multi and bilateral institutions and to individual and corporate donors through briefings, research presentations, field missions, and report writing and dissemination.
IV. Monitoring and Evaluation
A monitoring and evaluation plan will be put in place from the project's inception. Both internal and external evaluations will be used to measure progress and assess obstacles. Increasing scholarship on HIV/AIDS, for example, will be measured not only with respect to the number of fellowships given, but also with respect to the quality and quantity of research produced, articles published in peer-reviewed journals, and the range of practitioners and social science disciplines engaged. Comparative and cross regional dialogue will be assessed by the range of interventions and locations identified in research, the composition of research teams and of electronic resource user groups. Strengthened research capacity will be measured by the way in which HIV/AIDS research is integrated into existing practitioner and academic work, into curricula and by levels of activity among local researchers. The impact of advocacy will be measured by the way in which HIV/AIDS policies, programs and interventions take greater cognizance of the social structural dimensions of HIV/AIDS and by the greater priority given to HIV/AIDS on global health, development and other policy and research agendas. Specially developed advanced database and web resources will also be used to track progress.
Factors that could inhibit success rest largely on the debilitating impact of HIV/AIDS on the research community itself (which will require a higher investment in human resources and capacity building); the methodological constraints inherent in carrying out social science research on HIV/AIDS (which will be addressed directly by focusing on methods within initiatives) and on the challenge of engaging leading researchers in an area that has been largely peripheral to the majority of social science disciplines.
V. Organizational Capacity
The SSRC was given founding support by the Rockefeller family 80 years ago with a mandate to reach across disciplinary and institutional boundaries and to bring the best social research to bear on problems of public concern. The SSRC is an independent, nonprofit nongovernmental organization governed by an international Board of Directors. It works on concrete analytic problems with real world implications by advancing social science research and education, enhancing communication among scholars and improving the quality of publicly available knowledge around the world. The SSRC builds bridges among academic disciplines and between scholarly researchers and foundations, governments, multilateral organizations, NGOs and the public. Some 400 social science researchers from more than 40 countries serve on Council committees, research teams or panels. Its distinctive niche is to innovate and incubate, to identify emergent lines of research that will be enhanced by interdisciplinary or international ties, to help scattered researchers build networks and nascent fields to achieve critical mass.
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