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.