AFRICAN STUDIES CENTER - UNIVERSITY OF PENNSYLVANIA
 

UNRISD: Community Responses to HIV and AIDS, 05/04


The United Nations Research Institute for Social Development (UNRISD) (www.unrisd.org) would like to invite your participation a programme of work on Community Responses to HIV and AIDS being carried out in co-operation with the Training and Research Support Centre (TARSC) (www.tarsc.org)

The programme aims to investigate and analyse the current responses to HIV and AIDS within communities, particularly where HIV incidence or AIDS mortality is high or increasing.

The programme will support from three to six studies subject to funding availability and carry out selected reviews during 2004/ 2005 that examine How communities are responding to susceptibility to HIV, particularly
in terms of prevention interventions that deal with risk environments,
How communities are dealing with the impacts of AIDS, particularly in terms of responses that provide caring and are able to sustain production and incomes
The role of social networks, of civil society and of state support in community responses, particularly in terms of those forms of support that enable effective and equitable prevention and caring responses to HIV and AIDS.

The programme will review and use the results of the research to propose The policy and programme implications for more effective support of community responses.

A background paper and summary have been prepared and provide more detail On the analytic framework, research issues and questions for the research.

The programme will bring invited researchers to a research workshop in Geneva. The workshop will discuss and review the analytic framework and the proposed research proposals. A range of research methods will be welcomed in addressing the research questions in the paper, including participatory methodologies that encourage reflection with communities, and research using social science, public health and economic methodologies. Research contracts will be made by UNRISD after the workshop and the research will be carried out in 2004 with final reports at end 2004 and a review workshop held in early 2005. Research contracts will be for approximately $20 000.

We are approaching you because of your work in this area, particularly in relation to communities, and because we hope that your participation in this programme can bring to us the valuable experience and analysis that you have and can also provide to you a useful forum for reflection and analysis for your own work.


Please let us know as soon as possible if you are interested in this work, in carrying out a research study and are available for the workshop (on the proposed dates) by sending a reply email with your feedback to Dr Rene Loewenson, the programme co-ordinator, to rene@tarsc.org.



We would then like to invite you to submit a 1-2 page 'expression of interest' concept note that outlines the research question you would seek to address, the community practices, study site / case study for the research, the geographical location, a summary of the methods that you propose to use, and a preliminary budget and time frame for the work. Please also provide a CV.

Looking forward to your response and hopefully to working with you! Please let us know if you have any queries.

Best Regards
Dr Rene Loewenson
(For the programme on Community Responses to HIV and AIDS)


UNRISD AIDS background paper

Community responses to HIV/AIDS: Strengthening social inclusion or carrying unfair burdens?

By Dr Rene Loewenson,
Training and Research Support Centre
UNRISD programme on Community Responses to HIV and AIDS January 2004

EXECUTIVE SUMMARY

HIV and AIDS is a devastating epidemic. By 2000, nearly 58 million people had been infected and 22 million had died. Each day sees over 15,000 new infections. The epidemic is a development crisis, that feeds on and worsens unacceptable situations of poverty, gender inequity, social insecurity, limited access to health care and education, war, debt and macroeconomic and social instability.

By 2004 there are signs that AIDS and its harmful impacts can be controlled. We know how AIDS is spread, what increases the risk of HIV infection and we have prevention approaches that have proven effectiveness. There are treatments that can significantly reduce the viral load, morbidity and mortality. There is global commitment to action on AIDS. How much are these signs and commitments translating to real change at household level?

A background paper provides a review of literature to begin to explore these questions, as the first stage in an UNRISD programme co-ordinated by Training and Research Support Centre (TARSC) on community responses to AIDS. The review

  • Identifies the context in the current state of the epidemic for community burdens and responses
  • Outlines the current responses to HIV and AIDS within communities, the levels at which these responses occur, the factors influencing these responses and their impact on susceptibility to HIV and vulnerability to AIDS
  • Examines the manner and extent to which civil society and the state organise resources and inputs to support community responses, and
  • Identifies the research questions arising from the review of documented research and experience and the analytic framework for investigating these issues.

The HIV and AIDS epidemic has shifted in many parts of the world from a decade or more of silent transmission of HIV and a further several years of increasing levels of HIV related infection towards an AIDS epidemic with high levels of illness and mortality. The number of people living with HIV and AIDS continues to increase in several regions, most markedly in sub-Saharan Africa, the Pacific, Eastern Europe and Central Asia. Globally, the highest rate of new infections is among young people in southern Africa. Increased susceptibility within regions, countries and groups can be traced to imbalances in access to resources and power and to the poverty and social disruption that follows political conflict, macroeconomic reforms, credit and monetary collapse and of loss of secure employment, production or assets.

The persistent nature of the epidemic and its increasing incidence in less powerful, more economically marginalised communities signal a need for a critical review of past policy and practice, particularly where this has left unchanged or worsened the risk environments that lead to new infection. The shift from an HIV to an AIDS epidemic, with its consequent increasing burdens of illness and death, will scale up the burden of impact and caring to significantly higher levels. It cannot be assumed that approaches used during the HIV phase of the epidemic, including those used by communities, will be adequate or sustainable under these new levels of mortality.

The determinants of susceptibility (or risk) to HIV range from biological and behavioural determinants (such as sexual behaviours), to wider micro and macro-environmental determinants (such as violence, mobility and income distribution). Sustained reductions in HIV transmission, particularly in communities that have limited individual resources, demands interventions aimed at wider risk environments. This brings into question, therefore, the equity and effectiveness of strategies that focus on changing individual behaviours without changing these wider risk environments. The persistent nature of the HIV epidemic and its increased spread in economically marginalised communities signal the weakness in such approaches.

The growing AIDS epidemic produces demographic, social, health and economic impacts at individual, household, family, community, production unit, sectoral and country levels. These impacts produce consumption and caring burdens, costs to production, incomes and savings, fallout from services and in losses in social roles. The available evidence suggests that caring and consumption burdens have been met by shifting resources from production and savings, particularly for more vulnerable, less well resourced households. This limits the capacities for future caring and mitigation of impact. Such approaches used during the HIV phase of the epidemic, particularly those used by communities, are not likely to be adequate or sustainable under increased levels of mortality.

The evidence suggests further that social cohesion plays a positive role in both reducing susceptibility to HIV and dealing with vulnerability to AIDS. Social cohesion reflects the collective networking, action, trust and solidarity of society, whether through regulated, authority driven systems or networks of trust and reciprocity. Social cohesion can itself be negatively affected by AIDS, however, undermining coping responses. The question is thus posed: Are social networks, institutions and capacities being used to widen the distribution of the costs of AIDS? Or are they being used to absorb burdens of AIDS that are unfair and that undermine longer term, sustainable approaches to prevention and care?

This background analysis of current patterns of susceptibility to HIV and vulnerability to AIDS raise a series of lenses through which the literature on community responses to HIV and AIDS is analysed. In particular it raises concern for how far community responses have been used to confront the underlying risk environments that increase susceptibility to HIV; and to influence the equitable allocation of social and economic resources to deal with the burdens of AIDS.

Such analysis of 'community responses' needs to take account of the fact that risk, impacts and responses arise at the level of individuals, households, extended families and wider social groups. The term 'community' thus needs to be disaggregated, and the relations between individuals and households explored. The networks within civil society and the state both have a role in these relations.

The documented evidence on community responses to susceptibility to HIV highlight that lack of knowledge of HIV status and more immediate survival demands can lead to community practices that increase, rather than decrease risk of HIV infection, particularly where resources and choices are limited. Risk environments have not been significantly changed, particularly when interventions target attitudes or behaviours, but leave unaddressed their economic, social and political causes. In these circumstances, individuals and groups with limited resources and power to act are left exposed to risk.
Community responses to the impacts of AIDS have largely taken place at household and extended family level. These responses often divert time and resources from production and market activities and from social services towards household consumption and caring. There is little evidence of households or social groups influencing the allocation of resources needed to support their responses.

There is some contrasting evidence of wider social responses to HIV and AIDS. Civil society networks have organised individuals and groups with shared risk to challenge stereotypes, and the economic and political conditions that influence risk. These have been greatly reinforced by state provision of legal, institutional, political and economic support to susceptible groups. Equally there is evidence of civil society and state interventions that support household caring responses, sustain production and incomes and sustain access to and use of social services in households affected by AIDS. Social cohesion appears to have played a role in these responses. Social networking has strengthened the voice and agency of susceptible groups to draw policy attention to risk environments. Social networking has also integrated affected households into wider networks of support and enhanced the outreach and uptake of supportive services from the state and civil society. These positive responses are, however, not widespread and are confronted by market oriented reforms in social services and their financing, by significant shortfalls in the coverage of public health, education and other services in many areas where the epidemic is severe and by weaknesses within civil society.

A research agenda

The lack of systematic empirical evidence of individual, household, family and social group responses to HIV and AIDS calls for research across many of the areas raised in this paper. Two areas are proposed for more focused work in this programme:

The first is to explore further the responses by social groups to confronting risk environments for HIV, particularly where there is a growing HIV epidemic. The findings from this review suggest that HIV prevention is more likely to be effective when responses within communities

  • Link individuals at risk in widening networks of social groups with a shared risk perception, and
  • drive interventions that go beyond behavioural or biological determinants to address micro- or macro-environmental determinants of HIV.

Research is thus proposed to explore this hypothesis, and to understand (through positive or negative practice)

  • the processes, institutions and factors that link individuals within networks of shared risk perception;
  • the influence such networking has had in enhancing the voice and agency of susceptible social groups and in shaping and driving prevention interventions that deal with risk environments;
  • the role that civil society and the state have played in these processes, and
  • the impact of these practices on susceptibility to HIV and on the effectiveness of prevention interventions, particularly for more economically and socially marginalised groups.

The second area of research is on the organisation of social support for household and family responses to the impacts of AIDS, particularly where there is a growing AIDS epidemic. The findings from this review suggest that the burdens of AIDS will be more equitably and sustainably borne when responses in communities

  • organise and build social networks to share the costs of AIDS and to direct resources and services towards vulnerable households and families.
  • relieve costs of caring and consumption and support production and market roles in vulnerable households and families.

Research is proposed to explore this second hypothesis, and to understand (through positive or negative practice)

  • the processes, institutions and factors that integrate households and families within networks of support around the impacts of AIDS;
  • the influence such networking has had in resources and services reaching vulnerable households and families;
  • the role that civil society and the state have played in these processes, including the resource inputs, transfers and services that have been effective in reducing consumption burdens and sustaining production, incomes and service use in households and families affected by AIDS;
  • the impact of these practices on vulnerability to AIDS, particularly for more economically and socially marginalised groups.

Both of these areas of research focus seek to explore different dimensions of equity and effectiveness in community responses to HIV and AIDS.

While both areas of focus explore the level of individual and household/family responses, they explore the role of social networks in providing voice and agency to individuals susceptible to HIV, and in organising the solidarity mechanisms needed for supporting households in dealing with AIDS. They explore responses that seek not simply to adjust individuals to existing risk environments, nor to enable households to absorb burdens of AIDS. They explore responses that seek rather to transform risk environments, and enable households to respond to impacts in ways that do not undermine their long term survival. This is argued to enhance the efficiency and sustainability of interventions aimed at prevention, caring and mitigation of impact. More importantly, it satisfies our aspirations for equity and social justice.



Page Editor: Ali B. Ali-Dinar, Ph.D.

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