WUNRN
Caregiving,
most often done by women, old and young must be recognised, valued and
validated as work. Women volunteer their time, energy, skills and the little
resources they have as they care for their family members at home and provide
their services to the wider community. However, the role women play in caring
for their family members living with HIV and orphaned children made vulnerable
by AIDS is rarely recognised or monitored and these women therefore remain
unsupported.
Value Women Caregivers - AIDS +
In
commemoration of World AIDS Day 2008, The Huairou Commission and GROOTS
International along with partners at CORDAID, the World YWCA and Help Age
International call for greater recognition and valuing of home-based
caregivers.
What follows is the
statement recently submitted to the 2009 Commission on the Status of Women by
GROOTS International, HelpAge International, the Huairou Commission, the World
YWCA, and the YWCA of Canada, which will focus on "The Equal Sharing of
Responsibility between Women and Men, including caregiving in the context of
HIV/AIDS"
We, the
undersigned non-governmental organisations, recognise that the AIDS pandemic
has changed the fabric of communities around the world and created a particular
burden in the lives of many people, especially women and girls. In many
settings where the health care system is already overburdened, women have
stepped in and filled the gap. This has been reinforced and legitimised by the
home and community based care policies and approaches of HIV and AIDS
responses, which in essence have shifted the primary responsibility from state
institutions to women's shoulders. Although millions of dollars have been
invested in responding to HIV and AIDS many times little, if any, of these
funds reach people caring for their family members or caregivers working in
communities.
The
International Women's Summit on Women's Leadership on HIV and AIDS convened by
the World YWCA (2007), and Grassroots Women's International Academy organised
by the Huairou Commission aptly brought forward concerns of caregivers.
Caregiving, most often done by women, old and young must be recognised, valued
and validated as work. Women volunteer their time, energy, skills and the
little resources they have as they care for their family members at home and
provide their services to the wider community. However, the role women play in
caring for their family members living with HIV and orphaned children made
vulnerable by AIDS is rarely recognised or monitored and these women therefore
remain unsupported. Community based caregivers are also not provided with
incentive or sustained support to enable them to continue with their unpaid work.
HIV and AIDS caregivers are not officially recognised as an extension of the
health care or welfare system, therefore their contributions are not mentioned
or included in the national accounts.
The agreed
conclusions of the Fifty-Second Session of CSW on financing for gender equality
reaffirmed that UN Member States have primary responsibility for promoting
gender equality and the empowerment of women and girls and that gender
mainstreaming and national machineries play a critical role in the implementation
of the Beijing Declaration and Platform for Action, but in order for national
machineries to be effective, adequate financial and human resources and
continued strong political commitment are crucial.
AIDS has
pushed leaders and members of civil society to address the gender inequality
and gender stereotypes that perpetuate the unequal sharing and responsibility
between men and women. The greater involvement of men and boys in caring for
family members and delivering community care giving, which many times includes
home based care, is crucial in responding in alleviating the burden of care on
women and girls.
Because of
their role as caregivers, women young and old are deeply affected by AIDS even
if they are not infected themselves. HelpAge International research with
communities in seven countries in sub-Saharan Africa shows that on average 40%
of people living with HIV are cared for by older people. A UNICEF study, also
in severely affected countries in Eastern and Southern Africa, similarly found that
between 40 and 60% of orphaned and vulnerable children are cared for by their
grandmothers. Caring for adult children living with HIV and orphaned
grandchildren places a huge economic strain on older people and impacts on
their health and emotional wellbeing.
Girls and
young women, on the other hand, are almost always the first to be taken out of
school when a family member falls ill. This greatly reduces employment
opportunities later in life as they do not develop income-generating skills
that their male counterparts are privileged to. Young women are more likely to
engage in sex work or transactional sex as a means of survival, or enter into
early marriages as an escape, leaving them vulnerable to HIV infection.
Caregivers
often experience stigma and discrimination, and are presumed to be HIV positive
just because they are involved in care work. Occasionally, because of this
stigma the patient is cared for secretly and this adds to the caregiver's
burden as s/he cannot be identified, trained or supported . Psychosocial
effects include stress, burnout and exhaustion that affects the wellbeing of
the entire family. The frequent lack of training and support translates into a
poor standard of care, exacerbating the caregivers' stress. Studies show that "home
based carers experience considerably more stress and distress than medical
carers, in the absence of adequate training, mentoring and support." In
response, caregivers have formed groups and networks to provide mutual support
and to build their own power. Through these groups and initiatives, caregivers
are engaging in peer learning, training and learning to negotiate with local
government authorities and decision makers to access funds and get themselves
into decision-making positions. Less progress has been seen in this regard with
older carers who remain largely invisible in the HIV response.
In order to
be effective, interventions to address HIV and AIDS must take into account the
impact caregiving has on women at different stages of their lives. We therefore
recommend the Fifty Third Session of the United Nations Commission on the
Status of Women to:
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