Tài liệu Sexual and Reproductive Health of HIV Positive Women and Adolescent Girls: A Dialogue on Rights, Policies and Services ppt

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Nevertheless, what the e-forums may have lacked in quantity they made up for in the
substantive content and depth of responses. This report is an attempt to capture the
major themes, weaving together the responses of both fora. As with all qualitative data,
caution should be used in making generalizations, particularly given the level of
response. However, the key findings are supported by other qualitative research on this
topic, including a recent EngenderHealth/UNFPA study conducted on SRH for HIV
positive women in Brazil, Ethiopia, and the Ukraine.

iii) Summary of Main Issues Raised

The overarching issue - at the root of barriers to care, lack of services and low quality of
existing care - was the high degree of stigma and discrimination experienced by HIV-
positive women. This and resulting violations of their human rights were prominent
themes throughout the duration of both fora, and provided a backdrop to virtually all
other topics discussed.

Another major theme was the lack of the most basic services responsive to the needs of
HIV-positive women. Participants in the ICW e-forum felt that on the whole, programmes
are not specifically tailored to their reproductive and sexual health needs. Women face
significant barriers at the domestic, community, regional and national level in realizing
their rights and sexual and reproductive health. Among those mentioned included:
inaccessibility of health centres; lack of respect for female patients’ rights and
judgmental attitudes among health care workers.

For participants in the interdisciplinary forum, the issue of health care provider attitudes
appeared to strike a particular nerve, with a flurry of responses related to negative
provider attitudes toward HIV-positive patients, and concerns about discrimination and
stigma in the health care setting. Other responses were sympathetic to health care
workers toiling in resource-challenged settings, with neither the training nor the
equipment/supplies to care for patients safely. Suggestions were made regarding ways
to improve counselling services for HIV-positive women seeking SRH care, as well as
ways to improve in-service and pre-service training for providers.

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II. Rights, Policies and Services

i) Rights

While the two major topics – “human rights and advocacy” and “SRH services and
programmes and policies” - were focused on separately during consecutive months of
the fora, themes of human rights violations in the context of SRH services permeated all
discussions and overlapped considerably. As it seemed more useful to discuss them
together, issues of human rights and how they affect service provision are considered
jointly throughout this report. For reference to the original topic areas, the weekly
schedule of questions is available in Appendix 1.

Stigma, discrimination and rights violations are addressed as an overview in the first
section of this report. Subsequent sections concern provider attitudes and treatment;
testing, counselling and disclosure; pregnancy-related decision-making; experiences of
marginalized women; and the effectiveness of human rights documents and advocacy.
The concluding section discusses gaps in services identified by participants, and offers
suggestions on improving services and maintaining or widening the scope of human
rights, going forward.

Human Rights Documents and Advocacy
The human rights segment of the e-forum posed questions on the effectiveness of
existing human rights documents and their potential use for advocacy, including the
following:
• How have international HR documents or advocacy efforts facilitated access to SRH
these services for HIV-positive women, if at all?
• What accountability mechanisms exist for them? How can we advocate for stronger
enforcement of human rights?
• What role can/should international documents ideally play in furthering HIV-positive
women’s access to sexual and reproductive health services? Have any international
or national human rights documents “trickled down” to have impact on the ground?

[A moderator added these key points to illuminate the discussion:

• At the policy level, international and national policy-making bodies can work to
ensure that international documents are sensitive to the needs of HIV positive
women.
• At the programmatic level, rights can be integrated into the design, implementation,
and monitoring and evaluation of programs so that concerns with issues such as
discrimination, and participation at every stage are addressed.
• Advocacy is another important tool that can be used by individuals and organizations
to promote human rights through reaching out to policy makers and other influential
groups, linking with activists working on related issues (such as groups focused on
family planning, violence against women, and poverty), and translating international
human rights norms to the work and concerns of local communities.
• The "human rights approach" to HIV/AIDS can be an effective way to protect the
rights of people infected with HIV, for example in putting together legislation and
policies. What is not clear, however, is how these laws have impact on people at the
community level, particularly HIV positive women. The protection of rights depends
on the government's commitment to rights and the ability of the community to assert

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its rights. A significant number of States continue to deny that HIV is a rights issue,
or disallow scientifically proven HIV interventions on the grounds of religion, custom,
or law. This is particularly true in relation to the vulnerability of poor women to HIV in
developing countries, and our inability to challenge violations of women's equality,
autonomy, and bodily integrity.]

These questions elicited several responses from the ICW forum, with very few
responding from the interdisciplinary forum.

HR Documents’ Utility for Women with HIV
One contributor had questions about whether any documents exist specifically to protect
the rights of women with HIV:

‘I also think it would be good to know exactly what treaties and agreements on
sexual and reproductive rights exist which we can use as tools and whether they
protect HIV-positive women specifically are there HIV positive women specific
treaties or agreements relating to our sexual and reproductive rights that we can
use as tools? I can't think of any - in which case there is a gap that needs to be
filled.’

Several people responded with ideas for resources:

‘I am thinking of CEDAW - Convention for the Elimination of all Discrimination
Against Women. I am enclosing a link from the Women's United Nations Report
Network which lists a whole range of declarations - mostly on human rights.
http://www.wunrn.com/reference/reference.htm
.’
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‘In my experience there are declarations that enshrine the rights of women such
as CEDAW and declarations that enshrine the rights of PEOPLE living with
HIV/AIDS such as UNGASS partially does. However, I have yet to come across a
declaration signed by States that enshrines or even mentions the rights of HIV
positive women. This means as activists we have to work harder to ensure that
policymakers understand our rights.’
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Response from the moderator: There are no specific treaties (conventions) that deal exclusively with
people living with HIV/AIDS. Treaty Monitoring Committees are groups of experts that receive periodic
reports from governments on their compliance with conventions and make recommendations about
compliance to governments (called Concluding Observations). These Committees have commented on the
situation of people living with HIV/AIDS in Concluding Observations to various governments. The CEDAW
Committee is preparing General Recommendation 26 on discrimination – General Recommendations
provide guidance to governments on how to interpret and apply treaties. Ipas and the Center for
Reproductive Rights wrote to the CEDAW Committee about violations of HIV-positive women's
reproductive rights and asked them to address these in the new General Recommendation.

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Response from the moderator: When treaties are ratified by governments, they have the authority of law.
CEDAW is such a treaty that governments oblige themselves to observe. Declarations – like the UNGASS
Declaration, Beijing Platform for Action and ICPD Programme of Action – are statements of intent by
government; they are supposed to live up to what is stated in the Declarations but these do not have the
status of law like treaties. However, Treaty Monitoring Committees do refer to Declarations when they are
making recommendations to governments.

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‘Although not signed by States a powerful declaration in my view is the Buenos
Aires Declaration 2004 - Human Rights, Women and AIDS. This has been signed
by a number of churches and as we know church leaders can be powerful
influences in our daily lives. [This declaration is on the ICW website].’

Stigma, Discrimination and Rights Violations
Stigmatizing and discriminatory attitudes toward HIV-positive women (and men) lie at the
root of many human rights concerns and violations, and result in poor quality of care.
Judgmental attitudes – whether from health care providers or the wider community - can
be huge stumbling blocks for people living with HIV/AIDS. Indeed, issues of access to
care, treatment and support cannot be considered in isolation, but must be viewed within
this larger context, especially within prevailing cultures that treat women unequally and
hinder their autonomy. Community-wide support structures are often scarce – even in
more developed countries - and women face being stigmatized when accessing
services. In poorer settings where women face obstacles of cost, domination by a male
partner, or obstruction by the extended family to accessing services, the problem is
magnified many times over.

The effects of stigma and discrimination against women with HIV/AIDS, and violations of
clients’ rights to appropriate care at the facility level because of this, were central
aspects of virtually all areas of discussion. The dialogue encompassed discriminatory
practices of providers, disparaging treatment of HIV-positive women, privacy and
confidentiality breaches, and differential access to services and treatment, as well as
poorly handled counselling regarding HIV testing, disclosure, and women’s pregnancy-
related decision-making.

Specific, contextualized examples of the effects of stigma and discrimination are found
throughout the various sections of this report, but below are some general observations.

In the experience of ICW participants, women’s value as patients in health care settings
and the quality of care they receive appear to decrease when they tested positive for
HIV. Anxiety about being judged and treated harshly can lead women not to get tested
or get into care.

‘In our experience- once you test positive your value as a patient depreciate[s]
due to combination of reasons including mainly the attitude of health workers.’

‘For women living with HIV/AIDS in [X country] the situation is that there is a fear
of going to get tested for HIV and then being referred to a specialist where often
this is where women are stigmatized and discriminated against and judged, and
face intrusive questions.’

One contributor, looking more deeply into the roots of stigma, felt more attention should
be paid to why people, particularly health care providers, are fearful around people with
HIV:

‘One of the issues that has not been paid enough attention is the role played by
fear in stigma, and that fear has been largely caused by the way we have talked
about HIV and AIDS for years and years. In our prevention messages we give
the impression that one sexual touch = AIDS and then go on to say that social
touching is not dangerous at all. That is a contradiction and so most people

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believe that we are telling lies about social touching whereas in fact we are telling
at least half-truths only about sexual touching. No wonder people are afraid and
as said below they do not know, or they do not believe the truth about needle
stick injuries etc, because of the way we have talked about sexual touching.

‘Therefore, maybe the primary right that has been violated for everyone is the
right to accurate and detailed information (not just messages) about the way the
virus is transmitted and not transmitted. This would go a long way towards
reducing the stigma caused by fear. From a human rights perspective also we
should see people as intelligent human beings who are much more likely to make
rational decisions if they are given the facts rather than hiding the facts for fear
that they will do something risky.’

The contribution below reflects the reality of how pervasive stigma remains; even among
those who are themselves involved in working with women, and of how crucial it is to
continually reinforce consciousness about these issues with providers and the
community:

‘There is always stigma in the communities and surprisingly enough even in our
own women[’s] organisation. The work of community sensitisation is very big but
we must do it. Stigma from health workers is still a problem and it’s about time
we went back to our health workers, especially the doctors and midwives and
PMTCT counsellors, and re-sensitised them.’

ii) Policies

Accountability in HR Laws and Policies
Even when policies or declarations do address aspects of women’s sexual and
reproductive health and reproductive rights there is no enforcement mechanism for
conventions, agreements and instruments ‘adopted’ by governments.

‘… In my experience these declarations, documents and guidelines are good on
paper, but do not necessarily get implemented to do the work they have been
meant for - that of improving the situation of the people- in this context- women
living with HIV and AIDS.’

‘The guidelines and the declaration are adopted and implemented by
governments on a voluntary basis. There are no enforcement mechanisms for
these. In some cases you see guidelines being adopted by national governments
but ending with the phrase 'subject to availability of resources'. This is very
worrying. I have seen some of these declarations, like the HIV/AIDS Charter and
the Sexual and Reproductive Charter being displayed in health centres, but
seeing or witnessing no evidence of staff understanding what it means or living
up to any of the calls, promises, and commitments it makes to services users.’

‘Many governments have policies on SRHR rotting on their shelves. What we
have to do is research which are those governments and then work towards
ensuring implementation. And we go into lobbying those who don’t have the
necessary policies. Some governments have HIV included in adolescents SRHR
policies etc. I believe that we need to know for sure and get a strategy in order.’

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Moreover, those who adopt the conventions and speak the language of human rights
often continue to violate women’s rights, albeit subtlely, or create policies that are
inadequate to the need.

‘The other disempowering experience of these international declarations is when
they are being discussed and referred to at policy meetings where one would be
invited to contribute an HIV positive woman's perspectives on things. You'd sit in
the meeting the whole day, listening to people quoting fancy acronyms, which
you are not able to attach meaning to, with no one to explain what all the
acronym mean and how it relates to you.

‘… our government don’t have good policies although we have an adolescent
health policy which doesn’t really address reproductive health in full.’

Advocating for Relevant Policy Reform
Having information on rights and sharing experiences was seen as very important for
self- and group advocacy. Clearly, not only must policy makers and service providers
understand women’s rights and needs, but HIV-positive women must as well, so they
are in a stronger position to demand those rights. Indeed, those who are not unified risk
having their rights infringed upon.

‘I think having information is crucial in any advocacy work, and support from
other HIV positive sisters in carrying out our work.’

‘Regarding human rights, it's very evident that our rights are violated; there is a
law on AIDS and the results we have obtained in that regard pertain to treatment
and self-help - if you are organized, they treat you well and if you're not, they
treat you like a dog… My experience has been that if we don't fight for others to
respect our rights, they will trample on us. We have to fight to live and our
experiences will help others survive… I have worked in projects for public
defence, in self-help groups and to promote social inclusion of people living with
HIV/AIDS. In this way, you help improve the quality of life of each person through
programmes of empowerment and training that are very good and help us to live
more healthily by changing habits, behavior, [and] attitudes and [acquiring] skills
that are very important to live in a healthy way.’ [translated from the Spanish]

‘… Our only hope, ladies, is to get out there and give it our best to educate our
fellow women about their sexual and reproductive rights and also their rights as
patients, so that they can educate women patients. If we are waiting for the
medical staff to recognize our rights, we are dreaming. It is us who have to make
them recognize those rights, it is us who have a responsibility to make them
respect and implement these rights.’

A contributor seeking to widen the discussion as to the most effective strategies for
promoting a human rights agenda asked this open question:

‘Another thing that might be interesting to consider is the tendency of mainstreaming
gender and sexual and reproductive rights and health in agendas. How do people feel
about this - is it useful or does in reality hide these issues?’


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iii) Services

Provider Attitudes and Discriminatory Practices
Much of the discussion related to discriminatory practices centred around providers’
behaviours within the SRH care setting, and the effects of negative or indifferent
attitudes toward women with HIV/AIDS on their willingness to access appropriate care.
One contributor, herself a medical provider, had this to say about the casual judgments
and violations of privacy among health care personnel in an OB ward:

‘Indeed we cannot stress enough the importance of the role of medical staff in
the HIV pandemic, particularly in Africa. Women have even failed to follow up
counselling services after being traumatised by hospital staff during delivery time.
I speak from a witness point of view as I lay in an intensive care ward after a C-
section and overheard nurses discuss my neighbour’s condition, emphasising
that she was positive and really should [not] be having her third child. I wonder
what more can be done to improve the attitude of Africa's medical staff.’

The following story, from a contributor doing research in India, suggests that issues of
compromised professionalism and lack of basic respect for confidentiality and privacy
are major concerns among health workers in general:

‘Let me relate my experience visiting a government ARV center in a high-
prevalence state of south India: the receptionist asked me if I would like to know
more about their counselling techniques. I said yes. So she took me into a
counselling room where a young government counselor was speaking with an
older man about his status. The receptionist told me he was positive. She told
me to sit down. The man looked at me and turned away. The counselor waved
me in and told me to sit down saying the man did not mind. I left.’

Other examples suggest that women will sometimes not disclose the true nature of their
medical concerns for fear of being treated poorly; or need to be very aggressive with
providers in order to get needed treatments. The inevitable result is inadequate care,
with clients not being listened to or treated with respect:

‘Some women have shared that they go to a clinic because they have an STI,
which they want treated but when they get to the clinic they'll say, they have a
discharge because they have changed their bath liquid. They’ll be knowing very
well that if they blame the bath cream for the discharge, they will get a vaginal
cream prescription, which is less effective to treat an STI related discharge but
they are not disclosing the STI because their fear negative consequences of
such disclosure.’

‘I have experienced difficulty in accessing Acyclovir in the local clinic and
hospitals. Having lived with herpes for a long time I know the symptom of when it
is about to manifest on the skin surface. The doctors will not give the treatment
until it manifest[s] which in most of the cases it might occur at the weekend; by
the time you get the chance to see the doctor, it is useless to take the meds
because the virus at this stage takes its course, which is painful and
embarrassing. Taking the medication as soon as the symptoms appear stops the
development of the sores etc. But the doctors refuse to listen to us. I know my
body and I wish that the doctors could understand that. One doctor put me on

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prophylaxis; my doctor at CDC (Centers for Disease Control and Prevention)
stopped and asked me if I knew how expensive it is costing the hospital to
provide me with the drugs. We are told seek medical help as soon as possible
but the reality is that the medical team delays the process resulting to conditions
of our sexual and reproductive health to get worse.’

‘The attitude the doctors have towards patients, that they are illiterate, in most
cases patients are not expected to question the doctor ’

Another contributor felt strongly about the need for women to be able to speak frankly
with health care providers about their sexuality concerns and needs, chastising those
who would blame women for their condition, and flagging the need for SRH-linked
programs for those affected by gender-based violence:

‘The environment at the healthcare service is not a good one to talk about what
happens to you at the home. I think this must change. We should be able to talk
about all our bedroom experiences in the health care service centre. Having an
STI or an unwanted pregnancy should not be blamed to women as we do not
choose to have these; we acquire these under severe violent situations in our
homes, from our lovers. There should be programmatic linkages between sexual
health and violence against women. I have heard researchers in different
meetings reporting that the presence of an STI and or HIV and AIDS suggests
that there has been violence. Why are then no programmes which address
battered women in the sexual health service?’

Provider Perspective
Taking the provider perspectives in situations where resources are scarce, infection
prevention measures are not in place, or providers are misinformed as to the (relatively
minimal) risks of infection, several e-forum participants urged greater attention to the
need for providers to be trained in issues related to infection prevention, as well as in
supporting human rights in the treatment setting and non-discriminatory care for HIV-
positive women.

A moderator posed the issue of provider fears of infection, along with the comments of a
health care worker explaining how this arises:

‘One complaint often voiced by people living with HIV/AIDS is that they suffer
discrimination within the health-care setting: health-care providers are unwilling
to treat them. One reason for this undoubtedly lies in negative attitudes that
some providers hold; another reason is providers' fears that they may contract
the virus themselves while giving care. Many providers are not aware that the
risks of infection through a needlestick or sharps accident are extremely low;
others even mistakenly think they might get the virus through non-invasive
procedures that do not involve any contact with body fluids at all. When
protective supplies are unavailable, these fears may be exacerbated. The case
cited below is illustrative of this point:

They are human beings, too. They do not have the skills necessary for such
care. Moreover, gloves, gowns, goggles, and masks necessary for universal
precaution are not readily available in most hospitals. At times, there is even no
soap or water to wash hands. Our salaries are very poor, we are short-staffed

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and work under stress that increases the risk of accidents and if we had pinpricks
and develop HIV, too; no one will take care of us. …It is not really our faults. We
need training; skills and a good working condition to enable us [to] cope with the
challenges of caring for these PLWHA." ‘

In response to the issue of provider fears, a contributor emphasized how critical it is to
address providers’ anxieties and to acknowledge and support the work they do under
challenging circumstances. She also pointed out that people understand risk-taking in
highly idiosyncratic ways:

‘We… need to remember that people have different perceptions of the meaning
of risk - and tend not to view risk in a rational way (look at the popularity of
gambling)… A doctor who would work tirelessly to save lives in an influenza or
SARS epidemic - when they are at great risk of infection and death - or rush in to
help people wounded in a bomb blast - when there might be another - might still
be wary of performing surgery on someone they know has HIV - even though the
risk is much smaller.

‘I think it is important to take the fears of health care workers seriously. If they
feel that their concerns are understood - and they are provided with accurate
information, the means to implement universal precautions, and the chance to
take post-exposure prophylaxis if they are inadvertently exposed to a serious
needlestick injury from an HIV positive patient - they will be more likely to be
reassured and to treat HIV positive patients well. As others have noted, health
care professionals are potent generators of stigma - how they behave with
patients is noted by all around them. They are also in a strong position to dispel
stigma – if they treat patients with HIV with respect, and touch them freely, then
others will see this and believe that HIV is not contagious.

‘But the story from Nigeria is very significant - especially the point about short
staffing and stress leading to accidents, and the feeling that "if we had pinpricks
and develop HIV, too; no one will take care of us." Most health care workers are
women - have poor conditions of work - and have a heightened awareness of
HIV because they care for so many patients and children with HIV that they
cannot save. In noting that health workers often generate stigma we should avoid
judging them. Most carry on looking after their patients despite their fears. They
deserve appreciation as well as accurate information.’

In this context - acknowledging the present-day potentially greater risks to providers
working in sub-optimal conditions - this contributor posed this question to the group:

‘I'd be interested to know whether members of the forum think that, in those
many places where antiretroviral therapy is still not readily available, should there
perhaps be a policy that infected health care workers should be given priority for
treatment (accepting that they may also have the same sexual vulnerabilities to
HIV as others)?’

One contributor, a physician, was not particularly sanguine about in-service sexuality or
human rights training for health care providers, arguing that until sexual and reproductive
health issues are institutionalized –and humanized – in nursing and medical schools (i.e.
“pre-service”), progress on this front will be minimal. She pointed out that, while money

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is devoted to in-service training and sensitization, medical and nursing schools are “still
teaching the same curricula they were 50 years ago,” with no mention of sexuality,
adolescent needs, patient rights, human rights to health, and gender equity issues, and
minimal attention paid to medical ethics,

’In short, we are not prepared at the universities to deal with the human and
social aspects of health and medicine. We are prepared (very well indeed) to
deal with technological advances, to recognise the DNA, to know what a virus is
and how it disrupts the physiology… we know how many women are dying from
maternal mortality in our province BUT we do not know what leads to that, what
inequalities and injustices provoked that a 14 years old adolescent lives trading
sex with no protection for food; we do not pay attention to a woman that comes
with broken bones due to sexual or domestic violence. WE ARE NOT TRAINED
FOR THAT. We are trained to deal with the flesh and the bones, but not with the
soul and the social factors surrounding this flesh and these bones.

’When are we going to start entering into the male dominated universities and
change the curricula and prepare medical doctors and nurses and lawyers and
economists with a rights and gender equity (I could say with a HUMAN)
approach??? Hope that sooner than later if we want to stop not only the
HIV/AIDS epidemic or its consequences, BUT if we want to stop poverty and
suffering of poor women and men and adolescents. Count on me if ever this
becomes a reality.’

Testing, Counselling and Disclosure
Testing for HIV is another area that provoked strong feelings; anecdotes attested to the
sometimes egregious violations of rights to privacy and information. For some, the
decision to test itself is fraught with danger. The researcher looking at domestic violence
in India reported her findings that many women in India are beaten or thrown out of their
homes if they test HIV-positive.

‘Thus in deciding whether to get tested, a woman makes a simple calculus: If I
test negative, the very fact that I had the test could result in a beating, and if I test
positive I may become a CSW [community sex worker] or die tomorrow at the
hands of my husband. So why test? To be effective, HIV/AIDS interventions need
to deal with these kinds of realities.’

For women who are tested for HIV, issues of informed consent are paramount; however,
these principles are often breached in practice:

‘In a workshop with obstetricians and midwives in an Asian country… two women
living with HIV share[d] their experiences of what it was like to find out their HIV
status in the year 2000. Unfortunately, [neither] receive[d] any pre-test
counselling - one woman's family members were told her serostatus before she
was and they ended up rejecting both her and her husband (who is also positive).
The first she heard about the test was when she was lying on the operating table
for a c-section and she overheard the operating room staff comment on her HIV
status.’

A moderator cited a recent ICW newsletter article "The Ethics of Pregnancy, Testing and
Stigma: The Crisis for HIV Positive Women." [http://www.icw.org/tiki-

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