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March 2006:
Panel Discussion on the
Burden of HIV&AIDS Care on Women and Girls
Hosted by VSO and the UK All Party Parliamentary Group on AIDS, on
International Women’s Day, March 8th 2006, at Portcullis House,
London
Background
It is the inequalities between women
and men that are driving the global HIV&AIDS pandemic, and in turn, this
pandemic is exacerbating existing gender inequalities. It is the women of
Africa that are particularly vulnerable and bearing the burden of this
pandemic. Women and girls are the most vulnerable to infection. 57% of
positive people in Sub-Saharan Africa
are female, and at the same time it is women and girls that carry the
burden of caring for the sick and dying.
VSO believes that if we are to effectively address the HIV&AIDS
pandemic we must place gender inequalities at the heart of our responses.
VSO’s advocacy work focuses on addressing three main areas in order to
reduce the burden of HIV&AIDS care on women and girls:
- Recognising and
supporting the rights of
volunteer community caregivers;
- Sharing the burden of delivering community-based
care with men;
- Improving
state systems to support community-based care.
VSO and the UK All Party Parliamentary Group (APPG) on AIDS hosted a
panel discussion, on International Women’s Day, to put these issues on the
table and illustrate their centrality to our response to HIV&AIDS among
key stakeholders in the UK.
The event was well attended with over 120 participants, including
Members of Parliament, Peers, NGO colleagues and academics.
Purpose
The purpose of the panel discussion
was to create a platform for policy makers and NGO colleagues to hear from
VSO staff and civil society in Southern Africa about their experiences,
realities on the ground and their recommendations for policy change; to
hear from DFID about their work in the area; and to present VSO’s
recommendations to address the crisis. In hosting this discussion VSO and
the APPG on AIDS hope that a space was provided for a lively and, we
believe, crucial debate. VSO believes that to date the issue has not been
adequately debated and we hope that this panel discussion contributed to
raising the importance and urgency of reducing the burden of HIV&AIDS care
on women and girls. We were encouraged to hear panellists and participants
sharing their experiences and solutions.
Panel Discussion Report
Welcome Address
Neil Gerrard, MP, Chair of the All
Party Parliamentary Group on AIDS welcomed participants to the panel
discussion and introduced Lord Chris Smith of Finsbury, VSO’s HIV&AIDS
Goal Patron.
Introduction from Chair
Lord Smith thanked Neil Gerrard, MP, and the APPG on AIDS for hosting
the discussion. He noted that there is not enough debate around the impact
of HIV&AIDS on women and girls, both in terms of direct impact and through
their caring responsibilities. He reflected on a recent trip to Swaziland
and South Africa where he was struck by the impact of HIV&AIDS on women
and girls and on their courage in responding to the pandemic. Lord Smith
then set the scene with some sobering statistics. There are 25.8 million
people living with HIV&AIDS in Southern Africa; 77% of all women living
with HIV&AIDS live in Sub-Saharan Africa.
Lord Smith welcomed our 4 panellists and explained that Miriam Zoll,
research fellow at the Massachusetts Institute of Technology's Centre for
International Studies Program and lead researcher and editorial consultant
for the leading UN publication, Women and HIV/AIDS: Confronting the
Crisis, could sadly not join us. Miriam’s paper is available in the
event pack and from VSO (please see appendix 1 on page 18 for a synopsis
of Miriam’s paper).
Lord Smith handed over to:
Jennifer Gatsi Mallet, International Community of Women Living with
HIV&AIDS, Namibia
Jennifer stated that the impact and cause of the burden of HIV&AIDS
care for women and girls is enormous and overwhelming. Caring for persons
who are ill, especially with the HIV virus, is extremely demanding and
carers are often on call 24 hours a day.
Though no-one in Namibia has systematically documented who is doing the
caring at family level, it is clear to those working in the field that the
burden of care is borne predominantly by women and girls as the back-bone
of community volunteers in care programmes for people living with
HIV&AIDS. Likewise, at the family level, responsibility for caregiving is
borne predominantly by women and girls.
Jennifer argued that women and girls are the least acknowledged carers
within the home as it is perceived that it is their duty to care according
to tradition and culture.
Jennifer placed the impact of caregiving into four categories:
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Girls’ loss of education, women’s loss of earning power;
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Women and girl carers forego their own needs. This can also
impact on their own health;
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Women living with HIV frequently are so involved in
community or home-based care activities that they do not have time for
higher level engagement or leadership such as policy advocacy, research or
programme development;
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Elderly woman and grandmothers are finding themselves drawn
into a role they just never imagined, caring for orphans on their pittance
of pension money and at the same time foregoing their twilight years where
they are supposed to be living in harmony and enjoying their old age.
Jennifer argued that women and girls are a precious resource who
provide quality care through a sense of love and duty. Their ability to do
so over a sustained period, however, depends on the protection of their
own well-being and morale. Although this is well recognized in principle,
care for the carers is rarely given necessary priority or the
acknowledgement it deserves thus producing “burnout” which is a serious
problem.
Jennifer outlined the impact of caregiving on the carers. The majority
of caregivers are burdened by having to witness day in and day out the
struggle of either their families or other families to meet their most
basic needs – for food, rent, medical care, clothes, children’s schooling
etc. and this can be extremely stressful.
Financial hardship is also one of the foremost causes of stress to
carers as they are often very poor and are already on the margins of
poverty themselves and not in a position to extend any assistance to
patients.
Jennifer made the point that much of the stress experienced by
caregivers is in the nature of the work itself – the fact that they are
dealing with an incurable condition that kills largely young people and is
heavily stigmatised causes terrible suffering. Therefore, it is vital that
caregivers also take time to care for their own needs. However, this is
being denied because of the workload brought on by HIV. Carers often need
help and support in understanding and learning to deal with their own
feelings as well as those of the sick person.
Jennifer gave an example from the Namibian context. The government of
Namibia together with some NGOs and Civil Society have taken steps to
train community counsellors and health workers to enhance their capacity
to provide community counselling support, national stress management and
burnout prevention to caregivers. The current statistics show that 125
community counsellors and 54 health workers (in a population of 1.8
million) were trained and are deployed to different health facilities to
train carergivers. This is not enough.
There has been ongoing provision of home-based care kits and food
parcels, but again this is not enough to cater for the huge population of
caregivers and only the lucky ones receive these kits.
Women and girl caregivers are likely to have greater self-respect, more
realistic expectations and deeper satisfaction from their work if they
have a sense of ownership of their community programmes either in the
family or at community level, rather than simply doing what is expected by
culture and tradition.
Jennifer stated that relieving poverty is a top priority. Income
generation schemes are much needed and much valued by HIV&AIDS affected
families and communities to relieve the stress of poverty. To relieve the
anxieties of dependency and insecurity, there needs to be greater
constancy of support from donors.
Jennifer argued that unless donors look more sympathetically on issues
of women and girl caregivers, they will be falling into the classic trap
of so many development aid donors in the past – that of purchasing
vehicles for development projects but making no allowance for fuel or
maintenance! There is much to be gained on both sides by donors visiting
programmes, going into the field with carers and seeing for themselves
what their work entails.
Jennifer ended by stating that the work of caregivers is a resource
that is too often taken for granted; carers deserve greater recognition
for their extraordinary and selfless contribution to the battle against
HIV&AIDS. Concern for their well-being should have the highest priority.
She stressed that:
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Their work should be recognised as inherently stressful and
the first requirement in supporting women and girl caregivers is to
acknowledge formally the work they are doing under the stressful nature of
the epidemic and how valued it is both by the government,
NGOs, Civil Society and the communities. This is particularly
important given that women and girls are taking on the burden of care from
over-stretched national health
institutions;
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Great care should be taken to ensure that women and girl
caregivers’ authority is not undermined;
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Women and girls carers need to know that it is their right
to be acknowledged, respected and supported.
Lord Smith thanked Jennifer and handed over to:
Augustine
Chella, Programme Manager, VSO Zambia
Augustine started by
explaining that he comes from a country where HIV&AIDS has a gendered
face. This has impacted on the entire population and consequently on the
social, political and economic development of the country, especially for
women. Infection rates are substantially higher among women (17%) than
men (12%) and for women in the 20-24 age group, HIV infection rates are
about 4 times the level among men in the same age group. A patriarchal
culture and traditional practices mean that women are subjected to
subordination. Zambia uses both English and customary laws. Customary
laws are based on traditions influenced by public opinion about standards
governing behavior or what society considers as a norm. Wife battering,
for example, is an acceptable experience for many women in Zambia as a
man’s way of showing their love.
Augustine argued that laws
are inadequate to protect women and girls from gender violence. Women and
girls in Zambia are socialized to be obedient – in schools, families,
places of work and courts of law. Most girls and women cannot negotiate
safer sex due to their low social and economic dependence. Unequal
property and inheritance rights further exacerbate women’s vulnerability.
Women’s access, acceptance and actual use of services like family
planning, community based therapeutic care (CTC) and prevention of mother
to child transmission (PMTCT) is dependent on men. This is exacerbated by
a poor public health system which provides limited access to and
utilization of sexual and reproductive health services by women and girls.
Augustine argued that there
is a lack of recognition of community home-based care activities as a part
of a continuum of services provided by the public health system. This
places the burden on women and girls to care. There is inadequate
recognition and analysis of the gendered dimension of care together with
retrogressive implementation strategies that do not address but reinforce
men and boys’ lack of involvement in caregiving.
Augustine argued that the
gendered HIV&AIDS epidemic in Zambia has significantly increased the care
burden of women and girls, impacting more on their already heavy triple
roles – reproductive, productive and community work.
The epidemic has led
to increased poverty and inadequate access to public services making the
care burden unviable for many women and girls with consequent social,
health and economic implications.
Women and girls pay a high
price in lost opportunities as they undertake unpaid care for family
members or others with HIV-related illnesses since they are prevented from
investing their time in other activities that generate income, improve
education or impart skills. HIV&AIDS has greatly contributed to the
feminization of poverty and disempowerment of women and leaves them out of
the development process in Zambia.
Augustine called for the
following responses:
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Strengthening of gender
oriented planning. Policy makers should ensure that all socio-economic
policies, programmes, plans, projects and national budgets are gender
responsive.
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Policy-makers should
embrace affirmative action and should ensure that deliberate efforts are
employed to remove barriers that prevent equal and effective participation
of women and men in the formal and informal education and employment
sectors.
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Policy makers should focus
their efforts to facilitate the repeal and amendment of legislation that
hinders women’s access to and control over productive resources such as
land, credit, information and technology.
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There is a need for
gendered development. Policy makers should sustain the provision of
accessible, affordable and quality social welfare services in areas such
as water and sanitation, health and housing for all.
Augustine concluded by
emphasizing the importance of supporting wealth creation for poor people
rather than poverty alleviation or reduction. Policy makers should devise
more wealth creation strategies and programmes as well as gender friendly
procedures for accessing benefits especially by women and girls. Good
examples are social transfer programmes that aim to increase household
investment for the most vulnerable.
Lord Smith thanked Augustine for his sobering thoughts and
handed over to:
Samantha
Willan, Policy Advisor, VSOUK
Samantha reminded us that we chose International Women’s Day to host
this event to emphasise the links between gender and HIV&AIDS and to
remind us that when we are celebrating the successes that women
internationally have achieved, we must remember the reality on the ground
for many women and girls – there is still so much change needed. As we
are celebrating today, we must be mindful that for many women across the
world, challenges remain immense.
Samantha outlined VSO’s programme and advocacy work in response to the
impact of the burden of HIV&AIDS care on women and girls. In response to
this impact, VSO is working on a number of levels. VSO sends
international volunteers (recruited globally, not just from the developed
world) to build local capacity where requested. VSO supports national
volunteering initiatives within developing countries to build national
volunteering; and works with partners on the ground to support community
volunteers in home-based care work. In order to ensure that the response
is sustainable Samantha illustrated that VSO supports programme responses
as well as undertaking advocacy at local and international level.
Samantha returned to the issue of impact. What VSO staff and partners
have observed is that home-based care for people living with HIV&AIDS is
falling on the communities (and not the state), and within those
communities it is the women and girls who are bearing the brunt. In fact
we hear arguments that home-based care is a cost effective response to the
crisis. Samantha argued that this is not the case – it is only cost
effective because it is based on the unrecognised and under-valued work of
women and girls. This is not cost effective - this is exploitation. These
carers, in addition to being unrecognised, are often not very well
trained, or supported which significantly affects the standard of care
that the sick receive, so not only does this burden have an effect on the
carers, but also on those receiving care.
Samantha emphasised that VSO does not argue against home-based care as
a response to HIV&AIDS. Indeed, VSO has found that many people prefer to
be cared for in their home & communities. One study in Zambia showed that
90% of interviewees would prefer to be cared for at home. Samantha argued
that VSO is not calling for an end to home-based care but for such care to
be recognised, and supported. Moreover, men need to be involved in
delivering care.
Samantha went on to define who we mean by caregivers. This is very
context specific and differs – but essentially they are the female primary
caregivers, the community caregivers, the community nurses, the many
layers of people who are caring for the sick and dying. Most are called
community volunteers as they are volunteering (i.e. not in paid
employment), some are working through organisations, and some are simply
caring for family and neighbours with no organisational support. We are
talking about the community volunteers who are responding to the crisis.
Samantha briefly discussed the drivers of the burden of HIV&AIDS care
as discussed by Jennifer and Augustine. She argued that one of the most
significant causes is that women and girls labour has less value, they are
traditionally the carers and society has failed to value or recognise this
work. Care work is perceived as women’s work and is traditionally unpaid
and under valued. In addition, many public health systems are weak and
the AIDS pandemic has bought an already simmering crisis to the boil. We
are seeing a lack of health care workers, medicines and
clinics/hospitals. Public health systems are failing and the women and
girls are responding to this need.
Samantha argued that the global community has also failed to respond
appropriately to this crisis. There is inadequate funding and inadequate
discussion, policy and programme responses.
In order to reduce the burden of HIV&AIDS care on women and girls,
Samantha argued that we must:
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Address structural inequalities between men & women;
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Support the immediate burden faced by women;
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Involve men as caregivers
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Meaningfully involve people living with HIV&AIDS;
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Ensure a comprehensive response at all levels, covering
policy reform and implementation on the ground. There will be no change
unless policy reform is translated to change on the ground. Equally,
existing policies such as the Convention on the Elimination of
Discrimination Against Women (CEDAW) must be implemented at local level.
Samantha ended her presentation by raising the gendered dimensions of
treatment rollout. She applauded the commitment to the target of
universal treatment for all people living with HIV&AIDS by 2010. Clearly
this is a crucial target, and we must achieve it. However, Samantha
suggested that we should reflect on the existing gendered burden of
HIV&AIDS in communities. We need to ask what the roll out might mean for
this burden on women and girls? Will this rollout be a key factor in
addressing their burden or will it increase the burden due to the need for
treatment management, support to ensure adherence, peer support etc? These
are traditionally female roles and we must explore the implications of
treatment rollout for women and girls. Samantha argued that we have not
thought enough about this and urged that with this rollout we are mindful
of the existing burden on women, and the structural inequalities that
exist between men and women. She stated that we must be thinking about how
we can roll out treatment without exacerbating these burdens on women and
girls.
Lord Smith thanked Samantha for a timely reminder that essential
to rolling out treatment for all by 2010 is a need for sustainability and
incorporation of a gendered analysis. Lord smith handed over to our final
speaker Robin Gorna, noting that she brings a unique perspective to her
role at DFID through a long career of HIV&AIDS activism.
Robin Gorna, Senior AIDS
Adviser, Department for International Development, UK
Robin thanked VSO for the opportunity to celebrate International
Women’s Day in this way. She emphasised that DFID’s HIV&AIDS Strategy:
Taking Action focuses on women and young people and thus is very
relevant to this discussion. Robin stated that she will focus her
presentation on two issues of great importance to DFID:
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Universal access to treatment for all by 2010
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Social transfers
Robin reminded us of the significant commitment made by the G8 at the
Gleneagles Summit last July to achieving a comprehensive package of
treatment, care and support for all by 2010. She highlighted some key
obstacles to achieving this target. For example, unless we tackle stigma
and discrimination head on, how can we tackle the burden of HIV&AIDS care
on women and girls? She argued that general “squeamishness around sex”
means that the sexual and reproductive health needs of women are not being
adequately addressed. Moreover, access to testing is denied to many women
across the world. For example, less than 10% of women globally have
access to testing during pregnancy, and under 5% in sub- Saharan Africa.
Robin argued the need for data on access to treatment to be disaggregated
by gender and said that the British government has been calling for this
ever since 2003.
In terms of social welfare models, in his DFID White Paper speeches,
the Secretary of State for International Development Hilary Benn has said
that he will explore these further. Robin made a strong argument in
favour of social transfers. She argued that it is all very well to
deliver services, but people need the bus fares and child care to enable
them to access these services. Social transfers are one way of addressing
this tension.
Robin highlighted that there are many models of social transfers - from
incentives to send children to school such as school feeding to farm
grants to direct cash grants. The principle underlying the delivery of
social transfers is that they are feasible and affordable. Furthermore, a
very small transfer can make a very large impact.
In Zambia, for example, a pilot was undertaken whereby women were given
an $8/month grant. The results were most encouraging. Robin suggested
that providing social transfers is one way of recognising the care that
women and girls are delivering in response to HIV&AIDS. She argued that
unrecognised caregiving is unsustainable.
DFID is not arguing for cash grants alone and Robin was emphatic that
there is so much more to development than social transfers. For example,
there needs to be far more focus on the psychosocial support needs of
people affected by HIV&AIDS.
Robin ended her presentation by showing the cover image of the UK
Governments’ Call to Action. The cover shows a Zambian grandmother with
the nine children that she cares for. This image shows the resilience of
women in responding to HIV&AIDS. We mustn’t lose sight of this.
Lord Smith thanked all panellists for their presentations and
opened the floor for questions.
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ALL-PARTY
PARLIAMENTARY 
