International Community of Women Living with HIV/AIDS (ICW)
MAPPING OF EXPERIENCES OF ACCESS TO CARE, TREATMENT
AND SUPPORT – Namibia (February 2006)
Prepared by Jennifer Gatsi Mallet (ICW Project Officer in Namibia)
Project description
WHO supported ICW to map positive women's experiences of access to care and treatment in three
countries - Namibia, Kenya and Tanzania. The findings will contribute to advocacy for increased political
support and resources to address gendered barriers to care, treatment and support. The project
complements a mapping and database of civil society organizations (CSOs) providing treatment by the
French consortium - SIDACTION.
Introduction
This report is derived from the visits made to two regions in the north of Namibia - Caprivi and Kavango.
The visits were conducted with four different groups at four different locations: 2 in towns and 2 in
villages. The total participants from the four groups were approx. 90. The groups came from; Namibia
National Women Association (NANAWO) in Rundu town, Tondoro group under the Catholic Aids Action
in Tondoro village, Mahohoma Mission Compound Group and Mapilelo Group under Catholic Aids Action
in Katima Mulilo town.
The meetings with the participants gave an opportunity and recognised WHO’s mapping exercise as a
holistic benchmark that establishes critical linkages between sexual and reproductive health and rights
and women living with HIV and AIDS.
Distribution of four sets of questionnaires (3 for women and 1 for men living with HIV were used). 2
questionnaires were filled in by service providers. Three more questionnaires were provided to Service
Providers in Katutura “Disability Resource Centre, Catholic Aids Action and Lironga Eparu” in December
and they have not yet responded. The four sets which were used have been compiled from all the four
groups and are attached as part of this report.
Background
I drove from Windhoek on the 12 of February (750 kms) and slept in Rundu. On the 13th I had my first
meeting with a group of 35 positive women from Namibia National Women Association (NANAWO)
group, a group which the Hon. Deputy Minister of Health and Social Welfare linked me with and
recommended that I visit this group. I introduced myself but I did not state my HIV status at the
beginning of the meeting and this caused no openness from the group of their status either. During the
discussions before starting the questionnaire, the group participants were saying they wanted to get this
information so they can help positive women whom they knew in their community but my observations
were that they were not sure whether to state their HIV status but were comfortable to talk as if they
wanted to help others rather than themselves. After realising this, I informed them that I was HIV
positive and I felt the great relief from the group, they started to be open about their status and all
participants started to participate openly without reservations. I introduced myself as working for ICW
and that ICW empowers positive women by empowering them to know their rights on health issues and
to have a quality life. I met the NANAWO group in the morning from 08h00 to 13h00. I had to drive to
Katima Mulilo, Caprivi Region (550 kms) and slept in Katima. The following day I met with Sister Jane
Wachila from the Catholic Aids Action, we discussed our program and from there we left for the first
group at Mahohoma Mission Compound about 8 kms out of Katima Mulilo. We had the meeting in a little
shack with five positive women and all were looking very sad and without hope, one had a very big rash
on her face which was affecting one of her eyes and when I asked what it was she did not know, yet she
had gone to the hospital with the problem and they gave her medication but she did not know what this
medication was for. To me it looked like either herpes or shingles. The condition of the living standards
was very disturbing as it had rained the previous night and the floor was muddy, that you can see that
they did not sleep well as water was seeping in the room. The leader of this group (Monde Kamwi, very
International Community of Women Living with HIV/AIDS (ICW)
International Support Office, Unit 6, Building 1, Canonbury Yard, 190a New North Road, London N1 7BJ, United Kingdom
Tel: +44 20 7704 0606 Fax: +44 20 7704 8070 www.icw.org
International Community of Women Living with HIV/AIDS (ICW)
vibrant and outspoken with a strong personality) was the owner of the house and she and her one-yearold daughter are both HIV positive. Her other five children are negative - ages ranging from 12 to 4
years. She is not married. The other four women were also in a similar position as the leader. After the
meeting with this group in the morning, we had a second meeting with Mapilelo group and 7 members
attended. They informed me that this group is very big but most women would not come as they were
busy in the fields so they were sent as representatives of the group to meet me. With this group one
could see the conditions were better even if they are also unemployed as the living conditions in Katima
Mulilo are much better with ablution facilities, electricity and access to amenities and treatment was
easier because of short distances. Catholic Aids Action informed me that they had very limited
resources to supply food to the two groups we met, but do so from time to time - it’s not consistent.
On the 15th I drove back to Kavango region in Rundu town and the following day I met with Sister
Margaret early in the morning (6.30am) to drive to Tondoro village about 200 kms out of Rundu town.
There was a large group of about 50 waiting for my visit and among the group there were 8 men (3 older
men and 5 young men) all living with HIV. Catholic Aids Action is operating in this area and they provide
a venue for the groups to meet, visit the surrounding villages and train Community Home Based Carers,
the majority of whom are also living with HIV. The feeling I got from this group is that HIV is being talked
about openly; stigma is a bit reduced as they were saying all households have been affected. It seems
from the discussions that they are getting a lot of support from their communities and most of the support
is compassion, love and togetherness. These communities are very poor and poverty is visible but the
sense of supporting each other is greatly visible.
From all these visits poverty was very visible and lack of proper information was a stumbling block in
accessing care, treatment and support. Lack of knowledge of their rights on all issues related to health
and SRHR in particular contributed to them being abused by the health professionals. There was also
discrepancies on the fees paid for accessing ARVs, some did not pay, some paid N$4,00 and some paid
N$10 and yet on enquiry with the Ministry of Health and Social Welfare in Windhoek after my visits, they
informed me ARVs should be free for those who cannot afford them but this seems not to be the case
and when I asked how do they determine who can and cannot afford, they did not have a clear answer. I
informed the Deputy Minister of Health about all the disturbing information which I received from the
groups I visited, she also concurred with me and told me she was just back from a visit to one hospital,
where she went in disguise without announcing her visit and she was very concerned with the way
patients were being handled by the nurses. She said she was busy taking action to see improvements
from nurses and she would be sending a circular to all government health institutions.
Some of the information I received were: Some of the women have been forced to go on injection
contraception without their consent and they were threatened that they will not receive ARVs if they do
not take the contraception. A mother who had just been discharged from hospital and had to take her
sick child (HIV positive) for her medication was refused medication for the child and herself as she did
not have money and had to go for 2 days without medication until she was helped by Catholic Aids
Action with the payment. Another man showed me his health passport and reported that he was
supposed to have been taking his medication for the last 2 days but because he did not have money to
pay the hospital at Tondoro, he was refused medication, which means he also had gone for 2 days
without medication and he was still looking for money to go and collect his medicine. This really is very
scary. Another mother was also saying she was under the PMTCT and followed everything which was
required of her to reduce the risk of infecting the baby (caesarean, 4 months breast feeding exclusively)
but when she went back home after four months she had to give the child her breast milk again as she
did not have the means to buy baby formula and she could not stand seeing the child crying because of
hunger. Food in general without even the required different kind of foods, was a big problem for most of
the people to adhere to the medication and most of the time they do not have food and it becomes very
difficult to take medication on an empty stomach and they were worried about defaulting and building
resistance. All did not have any access to good nutrition due to poverty and not having the variety of
foods needed. A few are getting a government small grant of N$300,00 per month and they were saying
International Community of Women Living with HIV/AIDS (ICW)
International Support Office, Unit 6, Building 1, Canonbury Yard, 190a New North Road, London N1 7BJ, United Kingdom
Tel: +44 20 7704 0606 Fax: +44 20 7704 8070 www.icw.org
International Community of Women Living with HIV/AIDS (ICW)
it was not enough as a 50kg of maize meal cost N$233,00 and most of them resort to eating soil when
hungry.
Most of the women in all the groups met were having difficulties influencing their partners/husbands to
use condoms. The only condoms available are male condoms. They were saying when they ask their
partners to use the condoms, the partners tell them “why should we use condoms when we are
already infected, we might as well enjoy the last pleasures without a condom”. The women
expressed they wanted to live for the sake of their children but are finding it difficult with the attitude of
their partners and they do not know how to change their lifestyles. (Microbicides, microbicides are our
hope here, these were my thoughts at that moment) All groups complained strongly about the lack of
care, support and treatment from clinics and hospitals. They said the attitude of health care workers is
‘you are going to die anyway, so why should we bother treating you’. They also complained about
confidentiality as a serious problem, word of someone being HIV positive can somehow get around
without them even telling anyone.
Most of the participants are unemployed and find it difficult to generate income for their sustenance.
They all expressed gratitude to the government and donors for bringing the medication even though they
are made to pay, they expressed their wish that the government and donors should make the medication
free, provide food or skills which can lead them not to become dependant and they also called for proper
information to be given to communities in connection with HIV, SRHR and any other health issues which
affect them because they believe knowledge is power. Women and girls also asked whether the
government could assist them with basic needs like food as they are facing the double burden of being
care givers as well as being HIV positive. In the Tondoro group there was one young lady who had
walked 40km to come to this meeting as she had had the announcement of my visit. She said she came
on behalf of her community especially to inform on the hardships of her community who did not have a
health centre near them; the nearest being the Tondoro clinic and also the burden of care women and
girls were facing. She said a huge number of girls had dropped out of school so that they can care for
either their parents or relatives and women were burdened by foregoing their own needs especially when
they are caring for the loved ones or the sick in the communities.
Conclusion
Stigma, a mark of disgrace and discrimination, are major obstacles especially in urban areas and big
towns to effective HIV prevention, care and treatment. This is greater in urban areas because of there
being different tribes and people having a sense of each for his/her own, whereas in the villages stigma
is less acute due to a sense of togetherness and familyhood as communities know each other. I felt this
difference of stigma during the visits in the North. In Rundu and Caprivi town I sensed a huge problem of
stigma, and in Tondoro and Mahohoma mission compound, I observed a bit of openness.
Stigma and fear of discrimination prevent people living with HIV finding out and being open about their
status. HIV positive people often fear that they will be rejected by their loved ones, turned away from
health services, denied housing or employment, shunned by their friends and colleagues, turned down
for insurance. Marriage puts women in a compromising situation where they cannot impose the use of
condoms on the other for fear of being misinterpreted by the other as being untrusting or sleeping
around.
Condom use is inconsistent and this puts women at more risk of re-infection and STIs. Evidence from
the visits indicated that even when the level of knowledge of HIV/AIDS is high, there is a need for regular
reinforcement of awareness campaigns on SRHR for women to empower them on how they can protect
themselves and also to enhance their knowledge on health issues which affects them including how to
treat or avoid them.
International Community of Women Living with HIV/AIDS (ICW)
International Support Office, Unit 6, Building 1, Canonbury Yard, 190a New North Road, London N1 7BJ, United Kingdom
Tel: +44 20 7704 0606 Fax: +44 20 7704 8070 www.icw.org
International Community of Women Living with HIV/AIDS (ICW)
Feminisation of poverty is taken to mean three things; the first being that women have a higher incidence
of poverty than men, secondly, that women’s poverty is more severe than that of men and finally, that
there is trend to greater poverty among women, particularly associated with rising rates of female
headship of households. For the above reasons, it is difficult for women to increase women’s access to
health care services especially in the context of the HIV/AIDS pandemic. In general in Namibia attitudes
towards women and the girl child are worsening. They suffer from harmful cultural practices, domestic
violence, prostitution, early marriages, rape and even marital rape. All those practices only help to
increase the spread of the pandemic.
Besides poor health conditions for women and girl child in Namibia, there is persistent social pressure to
enter into early sexual relationships and sexual exploitation of girls by older men (sugar daddies), adding
to that there is also resistance to explicit messages on sexuality and safer sex practices from parents,
schools and religious institutions.
All the groups and leaders of CSOs I met during the visits did not have any knowledge on the rights of
women nor any international conventions to which the Namibian Government had acceded and ratified.
Attempts to ameliorate the condition of women when it comes to reproduction and sexual health have
been made. For instance, Namibian former oppositional Member of Parliament, Rosa Namises, urged
the Government to reintroduce the controversial Sterilisation and Termination of Pregnancy Bill of 1996
in the National Assembly. She brought up the connection between women’s health, unwanted
pregnancies, unsafe abortions and the AIDS pandemic in Namibia.
A parliamentary discussion took place amidst high incidents of HIV/AIDS infections which were being
detected among pregnant women in Namibia. The Government had been compelled to withdraw the
Sterilisation and Termination of Pregnancy Bill after public outcry without any research on the extent of
unwanted pregnancies and unsafe abortions in Namibia and their effects on women’s lives.
International Community of Women Living with HIV/AIDS (ICW)
International Support Office, Unit 6, Building 1, Canonbury Yard, 190a New North Road, London N1 7BJ, United Kingdom
Tel: +44 20 7704 0606 Fax: +44 20 7704 8070 www.icw.org
International Community of Women Living with HIV/AIDS (ICW)
Annex one: Focus group discussion - Women living with HIV and AIDS
Information and knowledge of rights, services and treatments
What do you believe are your rights regarding access to care, treatment and support as a woman living with HIV or
AIDS?
We believe information and knowledge is our rights to accessing care, treatment and support.
If you decided to have a child, what would be your main concerns? Where could you find answers to these?
Concerned about the child getting affected by the ARVs
Concerned in having an infected child
Health seeking behaviour
Under what circumstances do you go to the clinic or hospital (as soon as you get sick, or wait until really ill before
seeking treatment?) What about other members of your family – partner, male children, female children?
Some go as soon as they start to get sick
Some wait hoping it will go away and go at the last minute
Some because of circumstances they cannot afford to go as they are most of the time busy supporting the needs of
the family, they only go when the situation is serious
As a positive woman, how do you try to stay healthy?
Some use condoms but it’s difficult as men do not like using condoms
Some would want to use the female condom but it’s expensive and not easily accessible
Some are scared to even initiate the use of condoms to their males as it will cause violence
Some have chosen to abstain from sex completely
What barriers do you face in trying to stay healthy and accessing medication including ARVs?
Most face barriers of food, long distances to access medication, not having any information on the type of
medication they take to help them to know how they work.
Involvement in services
Are you involved in providing any care or support activities in your community (e.g. HBC, support groups, OVC,
counselling other people living with HIV and AIDS, etc)?
Some are involved in Home Based Care in the community
Some are involved in care for OVCs either their own immediate relatives or within the community
Some provide counselling to those who have been newly informed they are HIV in the support groups
All participate in support groups
What are the problems and challenges you face in providing care in your community?
The problems faced in providing care is the shortage of food and sometimes you need to access medicine for the
person you are caring for but you yourself as a treatment supporter are sick and you cannot walk the long distance.
This causes problems as it means the sick person misses 1 or 2 days treatment.
Who supports you in this work and how?
Most of them its out of compassion and some have no choice but see it as their duty and there is always no
support either from the family members or the government.
Experience of services
How comfortable are you with the different care, support and treatment services you have access to?
International Community of Women Living with HIV/AIDS (ICW)
International Support Office, Unit 6, Building 1, Canonbury Yard, 190a New North Road, London N1 7BJ, United Kingdom
Tel: +44 20 7704 0606 Fax: +44 20 7704 8070 www.icw.org
International Community of Women Living with HIV/AIDS (ICW)
All are not comfortable with the care and support services but are happy that at least they get ARVs even if they
are paying for the drugs.
How well are you treated?
The treatment is not well at all for all the participants. They all want to be treated like human being not like animals.
Have you had any experiences of being forced into treatment, or feeling scared of taking certain kinds of treatment,
or being given the wrong medication?
Some have been forced to go on the injection contraception without their consent and they were threatened that
they will not receive ARVs if they do not take the contraception.
Some have been given wrong medication only to find out later when they reacted to the wrong medication and no
apologies or explanations were given by the nurses.
Some were scared when they were told they were going to go on the ARV program as they had heard so much
nasty and bad information about the drugs.
What did you do?
Do you feel that your experience of services is different as an older / younger woman? (think about services or
information offered, attitude of health service providers, barriers to accessing the services, overall experience of
treatment, etc) Please give details.
For older women they are stigmatised and judged as if they are the ones who brought the disease. They also face
discrimination especially if they do not understand what the health service providers are telling them: they feel like
not accessing the services again.
For younger women, it’s even worse as they are perceived to be prostitutes, sleeping around with older men.
Both groups feel all the above mentioned makes them feel like not seeking treatment and counselling from these
institutions.
Sexual and Reproductive Health
When you access treatment on PMTCT, have you been given advice on sexual relationships, contraceptives,
sexual health and STIs?
For those who used this service, they did get access to treatment but not on advice on sexual relationships,
contraceptives, sexual health and STIs.
If PMTCT services are provided do they care for the mother’s health as well as the child’s?
During the Post natal they care for both by providing services but still during this period the treatment is very
discriminatory and much stigmatised.
What barriers have you experienced to accessing sexual and reproductive health services?
There is no one to one discussion with the health professionals for sexual and reproduction services, you only get
the flyers lying around the clinics and hospitals which most of the time nobody bothers to even pick it up and read.
Do the services provide continuity of care (including counselling) after pregnancy, abortion, treatment for STIs etc?
There is no such service at the health centres; we only get this kind of care, counselling and information on STIs at
support groups during sharing of information amongst ourselves.
Do you feel comfortable accessing the services? If not, please explain what problems have you encountered?
We do not feel comfortable in accessing the services but we have no choice. If we had choice we would avoid
health centres as a plague. The reason being the treatment of patients is undesirable, demoralising.
International Community of Women Living with HIV/AIDS (ICW)
International Support Office, Unit 6, Building 1, Canonbury Yard, 190a New North Road, London N1 7BJ, United Kingdom
Tel: +44 20 7704 0606 Fax: +44 20 7704 8070 www.icw.org
International Community of Women Living with HIV/AIDS (ICW)
Are there any conditions attached to qualifying for services? (e.g. sterilisation if an abortion is sought)
We do not know as we do not even know what sterilisation is, there is no information on sterilisation at all.
Are younger and older women able to access the same services with the same ease? What different problems do
they face?
No, younger women are at a more disadvantaged position as they are more stigmatised, discriminated and pointed
fingers at as immoral young women and sometimes even told ‘what were you thinking when you were having sex,
you deserve to be infected.’
What needs to change (focus group?)
How could services better suit your needs and address your concerns as an HIV positive woman?
A friendly environment, with compassionate nurses and more time to give us information on health issues would
make a big difference.
What changes are needed to improve sexual and reproductive health services in your area?
Information and information in understandable language not doctors’ language which we will not understand, and
this information to be provided by CSOs, the health promoters constantly in the communities or at health facilities
with groups of women living with HIV.
Women living with HIV should be given priority to be trained to give information and take it to their communities and
pass it on.
Other services:
Which other services help improve your understanding of health and treatment issues and your access to health
care services?
Transport: this could help if money was available, as we are forced to walk long distances and by the time we
reach the health facility, there will be a queue which means we have to wait a long time before we get access to
medication and most of the time we will be hungry.
Family / support networks: For those of us with support from family it helps a lot but for those without family
support it is a big challenge. Support networks of support groups are very helpful in sharing of information.
Nutrition: Nutrition would help but that is our main challenge as we do not have access to nutrition in general not
even considering the required kinds of nutrition.
Housing: Most of us are living in squalid conditions and this does not help at all, we are affected by TB because we
are living like rats, when it rains we do not sleep lying down, we sleep standing as rain will be flowing in the room,
we live in a small room of either plastics or zinc with 12 to 14 people in this room. The hygiene standards are very
low; there are no toilets for us in the villages, we go to the bush.
Education (relevant to accessing services; skills building): Some of us are educated and are employable but some
of us are not educated. We need skills training. We need the government and donors to train us on viable skills
like gardening, craft etc. so that we can grown our own vegetable and fruits for our own nutrition and also as an
income generating activity and crafts to sell to the tourist industry.
Community based care: There are community volunteers and the majority is us who are living with the virus are
grandmothers. As community carers we also need support for our well being, support with grants for the work we
are doing.
Support groups: Support groups are a great source of support and comradeship but the resources are limited.
Counselling: People living with HIV should be trained to become community counsellors as we feel counselling
does not end with VCT but should be constant.
International Community of Women Living with HIV/AIDS (ICW)
International Support Office, Unit 6, Building 1, Canonbury Yard, 190a New North Road, London N1 7BJ, United Kingdom
Tel: +44 20 7704 0606 Fax: +44 20 7704 8070 www.icw.org
International Community of Women Living with HIV/AIDS (ICW)
Annex 2: Service providers – focus group discussion on violence against women
What do you understand by the term Violence against women?
a)
As service providers we understand violence as physical and emotional abuse of a woman from another
person
What services do you provide for women who have experienced violence?
Counselling and advice to go to the Women and Child Protection Centre (WCPC)
How are these services tailored to address the particular concerns of HIV positive women? (E.g. How do you
create an environment in which an HIV positive woman can talk openly about her status and experience of
violence)
We counsel the woman in a closed room situation with one woman counsellor and sometimes we assist her by
taking her to the WCPC
What kinds of violence can women report here?
The most cases are physical assault with emotional abuse and thrown out of the house and rape cases
What forms of violence are most commonly reported here?
Physical and emotional abuse
Procedures and referrals
What procedure do you follow if a woman who is HIV positive comes to report an incidence of violence?
We counsel first and do the referral to WCPC
Do you offer medical advice/services? If not, is a referral made on behalf of the client?
Referral to a health facility if the woman has been physically abused or raped
Do you offer legal advice/services? If not, is a referral made on behalf of the client?
Referral to health facility if the woman has been thrown out, beaten up etc.
Do you offer counselling services? If not, is a referral made on behalf of the client?
Yes, through our trained counsellors
Do you have a policy of programmes to protect the client from further violence (e.g. Safe houses, perpetrator
rehabilitation, restraining orders)? Please give details.
No policies in place
How do you monitor the speed and effectiveness of referrals and follow-up actions?
Through WCPC and our own support group meetings and through other members reporting back on the situation if
the woman has not attended
What procedure exists for a woman to make a complaint about the service?
She has to have been physical abused, thrown out of the house, or believes her life is in danger
Legal Action
International Community of Women Living with HIV/AIDS (ICW)
International Support Office, Unit 6, Building 1, Canonbury Yard, 190a New North Road, London N1 7BJ, United Kingdom
Tel: +44 20 7704 0606 Fax: +44 20 7704 8070 www.icw.org
International Community of Women Living with HIV/AIDS (ICW)
Through the Legal Assistance Centre
How often do the cases go to court?
Do not have any idea as we do not do this kind of follow-up
Of these how many result in convictions?
Do not know
What is the average time frame from reporting the incident to sentencing a perpetrator of violence?
In Namibia, it takes a very long time sometimes 2 to 5 years
How often do women withdraw or drop cases after they have initiated a legal process? What are the reasons for
this?
Most often women withdraw cases: either they have been threatened, or the treatment they get with the law
personnel is not very friendly to women or they give up if the case takes too long to reach the final sentencing of
the perpetrator
Resources / Quality of Services
What training on HIV and VAW do service providers receive? Do they include information and counselling on
PEP?
None
What do you do to make the experiences as comfortable as possible for the women who report incidences of
violence?
We comfort and give her support and show that we care for her
How do you ensure friendly services and positive attitudes among the police/health workers/counsellors etc.?
This is very difficult and we do not know how to influence positive attitudes
What constraints do you face in protecting the rights of HIV positive women who have experienced violence?
Not having proper training on VAW so as to understand how to effectively assist women and also training on followup, monitoring and evaluation to see how many women are being violated
How are HIV + women involved in programmes – as target groups only, or as specialists, consultants, managers
and in leadership roles?
As target groups and as Home Based Carers and Counsellors
Are they paid staff or volunteers?
No
Section on Change
What additional resources do you need to address the needs of HIV positive women who have experienced
violence?
Training, workshops and exchange visits to other similar providers with best practices
What are your plans to improve the services for HIV positive women who have experienced violence?
To start support groups for VAW
International Community of Women Living with HIV/AIDS (ICW)
International Support Office, Unit 6, Building 1, Canonbury Yard, 190a New North Road, London N1 7BJ, United Kingdom
Tel: +44 20 7704 0606 Fax: +44 20 7704 8070 www.icw.org
International Community of Women Living with HIV/AIDS (ICW)
In what way does your service help to reduce the rate of violence against women, in particular women living with
HIV and AIDS?
By giving information of where to turn when in trouble
Annex 3: FOCUS GROUP DISCUSSION with SERVICE PROVIDERS
Catholic Aids Care (CAA) – Katutura, Namibia National Women's Organisation (NANAWO) – Rundu, Catholic Aids
Care (CAA) – Rundu and Katima Mulilo
Services (including information provided, equipment and medicines and cost)
NANAWO: HBC, New Start Centres, sensitisation through nurses, use of condoms. NANAWO’s goals and
objectives are to provide appropriate information, care and support to people living with HIV and AIDS.
CAA: Information is provided during support group meetings but there is a need for more appropriate information
given to service providers so as to pass on to their members. Vitamins, oral rehydration packets, if one has
diarrhoea and paracetamols are provided but in some cases they will not be available.
1.
What are some of your objectives and goals as a service provider?
a)
NANAWO: that each positive woman knows her status on her rights, reduce OVC.
CAA: we believe they have a right but do not know whether there are any guidelines on the rights of
women in terms of ACTS.
2.
What do you believe to be HIV positive women’s rights in terms of access to care, treatment and support?
a)
NANAWO: that each + woman know her status and their rights so as to reduce the OVC problem.
CAA: they have rights
3.
What do you believe to be HIV positive women’s rights in terms of sexuality?
a)
NANAWO: have rights to enjoy sex like any other woman but there is a dire need of femidom.
CAA: We also believe they have rights to their sexuality.
4.
What do you believe to be HIV + women’s rights of having children?
a)
NANAWO: the right to have children but only for positive women who are near health centre and not
positive women in remote areas without health centres.
CAA: we believe it’s their right but we think it’s a high risk.
5.
Are you familiar with any documents listing sexual and reproductive rights, such as the Barcelona Bill of
Rights?
a)
No from all service providers
6.
Would you be comfortable discussing sexual and reproductive rights with clients?
a)
NANAWO: yes, positive women feel comfortable discussing sexuality despite taboo because we are losing
positive women one by one, from CAA - yes
7.
Do you provide services relating to STIs, TB, pap smears and breast cancer?
a)
NANAWO: yes for TB from state hospital, no for pap smears and STIs but sometimes have mobile clinic
charging N$10,00.
CAA: none
8.
Do you provide any services that are only for men or only for women? (Please give details). If not, are you
aware of any such services?
International Community of Women Living with HIV/AIDS (ICW)
International Support Office, Unit 6, Building 1, Canonbury Yard, 190a New North Road, London N1 7BJ, United Kingdom
Tel: +44 20 7704 0606 Fax: +44 20 7704 8070 www.icw.org
International Community of Women Living with HIV/AIDS (ICW)
a)
No from all service providers and not aware.
Services particularly for women/women with HIV, stats on access etc.
9.
Do you provide any service or programmes specifically for women or women living with HIV or do any of
your services address the specific needs of HIV positive women?
a)
NANAWO: confidentiality
CAA: not in particular
10.
How are these service adapted to make them more suitable for HIV positive women? (e.g. Female staff,
different opening times, treatment for women only medical problems, etc.) How are they adapted for HIV positive
women and girls?
a)
No from all service providers
11.
How do you ensure confidentiality for HIV positive service users?
a)
NANAWO: there is no confidentiality from NANAWO, no answer from CAA.
12.
What training is there for staff on positive women and girl’s care, treatment and support issues?
a)
NANAWO: No training and they need training.
CAA: some staff are trained, and others are not and need training.
13.
Do women and girls have to meet any conditions if they want to access services? (for example, do they
have to have the permission of a husband or guardian; are they required to be using a certain type of
contraceptives in order to access ARV treatment?
a)
NANAWO: some cannot access health care because husband do not want people to know their status.
CAA: Yes [not elaborated on]
14.
Do you provide advice, counselling, care and support in relation to any of the following? Please give details
in each case;
a)
Sexual relationships
NANAWO: yes – to know their right to say no, to use condom, from CAA, yes but no further elaboration
b)
Having children
NANAWO: yes – ARV before delivery, breastfeeding exclusively for 4 months, from CAA none
c)
Dealing with unwanted pregnancies (e.g. emergency contraception, abortion)
NANAWO: advise them to go and seek health centres but it is difficult in remote areas for women to access
health centres due to lack of health centres, from CAA – Yes but no further elaboration
d)
Breastfeeding
NANAWO: exclusive breastfeeding for 4 months, from CAA – yes but no further elaboration
e)
Violence against women
NANAWO: referrals to Women and Child Protection Centre
Problems and Challenges
15.
What problems do you encounter when treating and caring for HIV positive women or ensuring that your
services meet their needs? Do you have any way of finding out what their needs are?
International Community of Women Living with HIV/AIDS (ICW)
International Support Office, Unit 6, Building 1, Canonbury Yard, 190a New North Road, London N1 7BJ, United Kingdom
Tel: +44 20 7704 0606 Fax: +44 20 7704 8070 www.icw.org
International Community of Women Living with HIV/AIDS (ICW)
a)
NANAWO: food to take ARVs with, distance to reach hospital
CAA: no response
16.
What problems do you encounter when treating and caring for HIV positive girls? Are they the same or
different to those encountered with HIV positive women?
a)
NANAWO: They all face same problems but young girls are more vulnerable as they turn into prostitution.
CAA: no response
17.
Do you have the necessary technical resources and knowledge needed for treating and caring for women
and girls living with HIV and AIDS?
a)
NANAWO: yes through Rundu state hospital for side effects only, as health providers do not have time.
CAA: no response
18.
What can women and girls do if they are misdiagnosed or given the wrong treatment or are unhappy with
the service in general?
a)
No response from all service providers – no idea
19.
men?
Are these challenges the same or different to the challenges you face in treating and caring for HIV positive
a)
No response from all service providers
Monitoring clients and services
20.
How do you monitor how well a newly diagnosed person is understanding and coping with her status and
whether they are getting the right treatment and support?
a)
NANAWO: this is really a problem as they are hiding their status until they start getting sick, we usually
refer them to support groups.
CAA: no response
21.
How do you monitor use and success of your services, including treatment provision, diagnostic services,
care, etc. for positive women and girls?
a)
NANAWO: through monthly meetings
CAA: no response
22.
How do you ensure continuity of care?
a)
NANAWO: monthly meetings, support group meetings,
CAA: no response
Involvement of HIV positive women in services
23.
How are HIV positive women and girls involved in your programmes – as target groups only, or as
advisors, specialists, consultants, managers and in leadership roles?
a)
NANAWO: as public speakers and advisors
CAA: no response
24.
How are HIV + men involved in your programmes?
a)
NANAWO: none
CAA: no response
Changes:
International Community of Women Living with HIV/AIDS (ICW)
International Support Office, Unit 6, Building 1, Canonbury Yard, 190a New North Road, London N1 7BJ, United Kingdom
Tel: +44 20 7704 0606 Fax: +44 20 7704 8070 www.icw.org
International Community of Women Living with HIV/AIDS (ICW)
25.
What additional resources do you need to address the needs of HIV positive women and girls?
a)
NANAWO: We are tired of promises, lets put our promises into practice: how to address stigma, fear,
labelling and insurance
CAA: no response
26.
What are your plans to improve the services available to HIV + women and girls?
a)
NANAWO: not sure but need the support of government.
CAA: no response
27.
Are these the same or different to resources and plans for HIV + men, and in what way?
a)
NANAWO: not sure
CAA: no response
Annex 4: Questionnaire for men living with HIV and AIDS
David and Solly are both living with HIV.
Information and knowledge of rights, services and treatments
Do you feel you get adequate information on the following areas?
ARV treatment
Yes from both men
Your CD4 count
Was only told once when they were sick and the CD4 count had to be
taken but thereafter no further information
Opportunistic infections
Yes, at clinics and government hospitals
Treatment for opportunistic infections
Yes, at clinics and government hospitals
Adherence
Yes, at clinics, government hospitals and support groups
Side effects of treatment
Yes, at clinics and support groups
Nutrition
Yes, at clinics and support groups
Healthy living
At support groups
Healthy motherhood
No information given to us as husbands or partners on mothers’
health
Planning for conception
No information given as most of the time do not attend clinics on
these issues
Sexual health issues and services
No information given
Violence against women
No information
Pap smears
No information
TB
Yes, if one gets infected with TB, but if not there is no easily available
information besides the clinics and hospitals
Contraception
No information as we do not attend clinics for family planning
What questions do have about treatment, care and support?
None
Health Seeking Behaviour
What precautions do you take to prevent transmission or your own re-infection?
Sometimes we use condoms but most of the times we do not bother to use condoms.
Do you have access to good nutrition?
No, it’s difficult to get all the required mixed kinds of foods which are recommended as we are out of employment.
Do you have advice on nutrition?
Yes, from the clinic and support is good, but what good ins having information and not having the means to access
International Community of Women Living with HIV/AIDS (ICW)
International Support Office, Unit 6, Building 1, Canonbury Yard, 190a New North Road, London N1 7BJ, United Kingdom
Tel: +44 20 7704 0606 Fax: +44 20 7704 8070 www.icw.org
International Community of Women Living with HIV/AIDS (ICW)
the food.
Have you ever shared your ARV medication with another member of your family?
No.
Access to Services
How far away is your nearest clinic or health centre?
5km from the squatter settlements we stay in Katutura.
How do you get there?
We walk most of the time and in a few cases when we have transport money we take public transport
Are you on ARVs? (Please give details: first line / second line? What combination? Do you have to pay for the
treatment?)
Yes, but we do not know what is first line, we only know that this is the medication we have been given from the
beginning (David 2003, Solly 2004) and it has not been changed since.
How long have you been on ARVs?
David since 2003, Solly since 2004.
Have you had any changes or interruptions in your treatment regime?
If so why?
Have never been changed to other medication.
What were the consequences for you?
N/A
Have you ever been treated for TB or any other opportunistic infection? (please give details)
Yes from both men for TB and STIs. TB: both went on the 12 month course.
Have you ever been treated for an STI or other sexual health matter (please give details)
Yes and STIs: gonorrhoea and Chlamydia trachomatis for both men.
Since you were diagnosed, have you ever accessed any of the following reproductive health services?
Service
Experience of this service
Comments
PMTCT
No, only the partner did
Our partners reported to us on the stigma,
discrimination and judgemental attitudes from
nurses who attended to them
Family planning services
None
None
Sterilisation
No information
None
Do you receive care and
support from:
Your family:
Your community:
None except my partner
None
Do you receive info
on treatment
(including ARVs,
OIs and side
effects, etc):
No
None
Please comment on your
experience of receiving care,
treatment and/or support from
these sources:
My partner is my treatment supporter
I live in silence, the community do not
know I am HIV positive
International Community of Women Living with HIV/AIDS (ICW)
International Support Office, Unit 6, Building 1, Canonbury Yard, 190a New North Road, London N1 7BJ, United Kingdom
Tel: +44 20 7704 0606 Fax: +44 20 7704 8070 www.icw.org
International Community of Women Living with HIV/AIDS (ICW)
Your workplace:
Health centres:
N/A
Care and support is very
discriminatory especially if
one is HIV at the clinic
Hospital:
No care at all
Your support group:
This is the only place we
feel comfortable
N/A
No ARVs at clinics
only TB and STI
treatment and
treatment for general
illness
ARVs, STI treatment
and general illness
treatment
No medication is
provided here but
information on STIs,
adherence, side
effects and reinfection
N/A
Most of the times medication for STIs
are not available even sometimes you
do not find pain killers.
People living with HIV have a special
unit where they access their
medication and it is like a clinic for the
undesirables and the nurses there are
not confidential and treat adults as
children
We wish we could also get ARVs and
STIs from the CSOs who facilitate our
support groups. We wish we could
get a lot of men coming to support
groups because it helps a lot, we now
understand so many issues which we
did not understand before.
Other (please
specify):
Are you involved in providing any care or support activities in your community (e.g. HBC, support groups, OVC,
counselling other people living with HIV and AIDS, etc)?
No from both.
Experience of services
Have you ever experienced stigma and discrimination as an HIV positive man in the health care setting?
All the time we visit these institutions, to a point one does not want to go back again.
Please give an example:
The way they treat people living with HIV is like we are cursed and like we are having leprosy like the story from the
Bible. They treat us like we are the living dead and they do not see any point of giving us medication. One nurse
even went to the point of saying “do not bother me you are going to die anyway” when I wanted to enquire about
my medication.
Are there any conditions to receiving ARV treatment (such as use of certain contraceptives)?
None that we know of.
Are the medication and other things you need always available when you go to the clinic or hospital?
ARVs are always available but the problem is money, if you do not have you do not get. Other medication for STIs
or medications in general, sometimes you get sometimes you do not get.
How do you access your health care and treatment?
1 Pay with own money – both pay with own money. When we do piece work like gardening, washing cars or
loading and off loading as casual, we make sure we save for the medication.
2 Another family member pays (n/a)
3 Employer pays (n/a)
4 Medical insurance (n/a)
5 Government provided (n/a)
6 NGO (n/a)
7 Other donation (n/a)
What changes are needed to improve treatment, care and support services in your area?
International Community of Women Living with HIV/AIDS (ICW)
International Support Office, Unit 6, Building 1, Canonbury Yard, 190a New North Road, London N1 7BJ, United Kingdom
Tel: +44 20 7704 0606 Fax: +44 20 7704 8070 www.icw.org
International Community of Women Living with HIV/AIDS (ICW)
Treatment should be available free for all who unemployed, nurse’s attitudes should be improved and ARV and STI
services should be given fully to CSOs who are supporting support groups.
Sexual and reproductive health services:
STIs and other sexual health
services
Sterilisation
PMTCT
Assisted conception
Family planning
Violence
Advice / counselling on sexuality /
sexual relationships
How far do you have to go to access these services?
5kms
Yes
No
Do not know about sterilisation but we guess if they provide
at the hospital then its 5kms
Partners: 5km, we do not seek these services, as we believe
they are for women
No
No, only our partners and we have never been interested in
these issues
5kms
3kms for the support groups on advice, 6kms for counselling
from VCT
No
No
No
No
No
Yes for support
groups, no for
VCT
Other services:
Which of the following help you to access treatment? Which is a barrier? (please give details)
Transport
Family / support networks
Nutrition
Help
Public transport is a great
help as it is cheaper at
N$6.00 per trip
Family, by being there to
support me emotionally
Sometimes from support
groups and donors
Housing
We live in shacks
Education (relevant to
accessing services; skills
building)
David is illiterate, can only
read and write Oshiwambo
and Solly is literate and can
read and write 3 languages
Mixed community with
different ethnics in urban set
ups
Community based care
Support groups
Counselling
Sharing of information,
sometimes given a meal
during these meetings
VCT centres
Barrier
As unemployed persons its difficult to find means of
having this money, so we end up walking to access
treatment
Most of the time family members are also poor and
can not assist us with money to access medication
Food is not consistent, sometimes you get once
after every six months a portion which normally
takes a week and its finished
When it’s raining, hot, windy, the environment is not
health, considering sometimes 12 to 14 people live
in a one room shack.
It is very difficult to access skills services for
income generating activities or small businesses,
first we do not know where to access information
on who can provide these
It is difficult to have strong community based care
in urban areas. In villages there is still a bit of
togetherness even though HIV and AIDS is causing
divisions in villages as well. The only community
based care we get is from Home Based Carers
coming from CSOs
Problems are that CSOs most of the times do not
have the resources to support us with food and the
meetings are only once a week.
Visited them once during the pre and post
counselling when blood is going to be taken for HIV
status
Personal information:
Your age: Both are in their early 30s
Which kind of area do you live in?
City …… Windhoek
Outskirts of city or town ……Okahandja Park
International Community of Women Living with HIV/AIDS (ICW)
International Support Office, Unit 6, Building 1, Canonbury Yard, 190a New North Road, London N1 7BJ, United Kingdom
Tel: +44 20 7704 0606 Fax: +44 20 7704 8070 www.icw.org