WUNRN
Direct Link to Full Document:
Home-Based Caregivers: Turning the AIDS
Pandemic into an Opportunity for Promoting Good Governance in
By
Shannon Hayes, Sarah Silliman and Anna Williams, with Esther Mwaura-Muiru and
Violet Shivutse
A paper for the
UNDP/University of Warwick Center for the Study of Regionalization and
Globalization Conference: Governance of HIV and AIDS Responses: Making
Participation and Accountability
Case
Study: The Kakamega District Home-Based Care Alliance - A Grassroots Women’s Initiative to Transform
and Improve the Local Government’s Response to AIDS
Members of Kakamega Home-Based Care Alliance have
demonstrated the capacity of grassroots women to effectively respond to local
needs and provide a platform for those most affected by AIDS to voice their
needs and concerns from their own perspectives. Grassroots women taking leadership in
forming the Kakamega District Home-Based Care Alliance initiated the process
without outside resources. Their aim was to meet the un-met needs of the sick,
abandoned and dispossessed, through both directly supporting them and also
bringing the attention of the general public and local authorities to their
contributions. By partnering with CACC
and the District Office, they set a precedent for a new way to forge
partnerships between civil society and local authorities to improve the AIDS
response. Through the organization and
intervention of the
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As HIV and AIDS began in the resource and infrastructure
rich Global North, and as activists and institutions from the North have set
the agenda in responding to HIV and AIDS, the pandemic has generally been
portrayed and responded to as simply a health issue. Treatment activists have
focused the world’s attention on accessibility of anti-retroviral medicines.
As the Kakamega case study reveals, for grassroots women
living and coping with HIV and AIDS, the epidemic is not simply a health
issue. It causes and effects are deeply linked to every aspect of their lives,
and grassroots communities do not see HIV as an isolated issue that can be
addressed without addressing other related issues, as is evident from the many
issues raised by the community in Kakamega during the Local to Local Dialogue
process. Women contract HIV when they are unable to negotiate safe sex with
their husbands, when they are subject to cultural practices (such as wife
inheritance) or when they have to put themselves in risky situations to make
ends meet. Poor food security and nutrition weakens poor people’s immune
systems, leaving them more vulnerable to the virus and, for people who have
already contracted HIV, more vulnerable to outbreaks of full blown AIDS.
Cultural stigma, exacerbated by lack of education on the causes of AIDS,
leaves HIV positive people isolated, hastening their deaths. Orphans who are
left behind become the responsibility of the entire community. Women who are left
behind (and often blamed for) their husbands’ deaths, and who are not aware of
national land policies have their property stolen by unscrupulous relatives,
leaving them and their children even more vulnerable. Assets and political
systems established in the community in response to AIDS are seen as part of
the local level political system, making AIDS a governance issue.
Through home-based care, grassroots women are creating a
holistic, women-led, community driven response to HIV and AIDS. Grassroots women
coping with the AIDS pandemic on a daily basis are clear that HIV is not just
a health issue. It is an issue encompassing all aspects of daily life – access
to basic services including water, sanitation and transportation, livelihoods,
food security and governance. Home-based caregivers provide palliative care,
treatment for opportunistic infections and psychosocial counseling, they
initiate locally appropriate and culturally sensitive stigma-reduction and
awareness-raising campaigns, provide nutritional counseling and promote food
security. As demonstrated it the case study, they are also improving access to
basic services by linking to the formal services that do exist, including
clinics and hospitals, mortuaries, feeding programs and to resources such as
bursary funds for orphans.
And while some of the direct health aspects of treating HIV
have improved over the past decade,
most notably due to access to anti-retroviral treatment, the related
livelihood and development factors that have made HIV and AIDS so devastating
in resource-poor countries, particularly in Africa, have not improved.
Grassroots women in organized self-help groups are therefore left to deal with
lack of health, transportation, water and sanitation infrastructure, poor
economic opportunities and governmental corruption and misallocation of
resources, in addition to linking neighbors and relatives to health clinics
and hospitals for ART, and monitoring adherence to the drugs. Caregivers are
also providing wide-ranging family support for HIV-affected families, not just
for individuals infected with the virus.
The results of the mapping process in Kakamega – which showed that caregivers are providing
for not only the HIV positive, but also massive numbers of orphans, widows and
other needy people – demonstrate that caregivers are effectively countering
isolation, stigma and discrimination faced by HIV positive people when they
are forced to seek care in hospitals or government clinics. Caregivers as they
work in their own communities with which they are intimately familiar, gain
the trust of the community through their capabilities, discretion and
diligence, and are able to reach the most marginalized, isolated cases,
providing care, linking them to information and services without necessarily
revealing their status to the community.
As lessons trickle up from the grassroots, understanding of
the multi-faceted causes and effects is growing, which is reflected in recent
research and programming more directly linking HIV to development, such as the
World Health Organization’s campaign on food security, and the International
Center for Research on Women’s focus on the links between women’s land,
inheritance and property rights and AIDS.
However, the complex interplay of poverty, culture, women’s
inequality, which is intrinsically understood by grassroots women working on
these issues on the ground, has yet to be fully documented and analyzed by
researchers, or to have more than a token impact on program design,
policymaking and funding. Therefore, facilitating grassroots women to voice
their views on HIV, and documenting their responses is a vital first step in
any effective AIDS policy or program.
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